https://www.orphandiseasecenter.med.upenn.edu/grants daily 0.75 2026-03-19 https://www.orphandiseasecenter.med.upenn.edu/grants/csnk2a1 monthly 0.5 2026-03-19 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - CSNK2A1 FOUNDATION PILOT GRANT PROGRAM 2026 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1773935941291-NQWT4ORUPGWADCX098E2/csnk2ai.png Grant Opportunities - CSNK2A1 FOUNDATION PILOT GRANT PROGRAM 2026 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-2026-w46hr monthly 0.5 2026-02-26 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2026 CDKL5 Pilot Grant Program Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-2026 monthly 0.5 2026-02-24 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2026 CDKL5 Pilot Grant Program LOI https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm-m4ag9-874bl-mmkgm-tby3c-mjldd monthly 0.5 2025-10-14 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1754080572885-LMTLXU69EOIWRCJFI64W/maroon.png Grant Opportunities - Million Dollar Bike Ride 2025 Pilot Grant Program - Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/2025mdbr monthly 0.5 2025-08-15 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/7ef45c77-00d5-4b6a-8f05-f30bfba6333b/maroon.png Grant Opportunities - Million Dollar Bike Ride 2025 Pilot Grant Program - LOI - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/wiedemannsteinerfullapp monthly 0.5 2025-08-11 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - The Wiedemann-Steiner Syndrome Grant Program 2025 - Full Application (invitation only) https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/a0f2d9b3-8268-4432-ae33-ca99c1c8efb3/WSS+Logo+2.png Grant Opportunities - The Wiedemann-Steiner Syndrome Grant Program 2025 - Full Application (invitation only) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/apbd2025 monthly 0.5 2025-08-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - APBD RESEARCH FOUNDATION 2025 PILOT GRANT PROGRAM https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1754579290657-054WK1K51RHV7XKHC94K/APBDRF.jpg Grant Opportunities - APBD RESEARCH FOUNDATION 2025 PILOT GRANT PROGRAM - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/wiedemannsteinerloi monthly 0.5 2025-07-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - The Wiedemann-Steiner Syndrome Grant Program 2025 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/a0f2d9b3-8268-4432-ae33-ca99c1c8efb3/WSS+Logo+2.png Grant Opportunities - The Wiedemann-Steiner Syndrome Grant Program 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/bloomsyndromegrant-4lc9n-pyyp7-zct9g monthly 0.5 2025-05-07 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - JACK BEAR FOUNDATION 2025 GRANT PROGRAM - Full Application (by invitation only) https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/f9dbec7d-2a48-4862-869f-3597804f75b3/JackBear+Logo.jpg Grant Opportunities - JACK BEAR FOUNDATION 2025 GRANT PROGRAM - Full Application (by invitation only) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/bloomsyndromegrant-4lc9n-pyyp7 monthly 0.5 2025-03-17 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - JACK BEAR FOUNDATION 2025 GRANT PROGRAM https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/f9dbec7d-2a48-4862-869f-3597804f75b3/JackBear+Logo.jpg Grant Opportunities - JACK BEAR FOUNDATION 2025 GRANT PROGRAM - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/bowfoundationloi-a532l-ygjt2 monthly 0.5 2025-04-02 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/410be620-7f46-47c8-93e9-014b5a14bd33/bow+foundation.jpg Grant Opportunities - Bow Foundation 2025 Grant Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-s5pw9-aypt6-f8edy-wfltb-zkfcw-jcr4t monthly 0.5 2025-03-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2025 CDKL5 Pilot Grant Program Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-2025 monthly 0.5 2025-02-06 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2025 CDKL5 Pilot Grant Program LOI https://www.orphandiseasecenter.med.upenn.edu/grants/bowfoundationloi-a532l monthly 0.5 2025-03-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/410be620-7f46-47c8-93e9-014b5a14bd33/bow+foundation.jpg Grant Opportunities - Bow Foundation 2025 Grant LOI Application https://www.orphandiseasecenter.med.upenn.edu/grants/bloomsyndromegrant-4lc9n-ly5bp monthly 0.5 2024-10-15 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - Bloom Syndrome Grant Program - Full Application (by invitation only) https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/b553e5b6-7a42-4348-9350-c2bfed69e4dc/bloom1.png Grant Opportunities - Bloom Syndrome Grant Program - Full Application (by invitation only) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm-m4ag9-874bl-mmkgm-tby3c monthly 0.5 2025-08-11 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1722889486593-WSBT7C22AE66PMRROQKK/GREEN.MDBRvector.transparent2024.png Grant Opportunities - Million Dollar Bike Ride 2024 Pilot Grant Program - Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/bloomsyndromegrant-4lc9n monthly 0.5 2024-10-15 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - Bloom Syndrome Grant Program https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/b553e5b6-7a42-4348-9350-c2bfed69e4dc/bloom1.png Grant Opportunities - Bloom Syndrome Grant Program - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm-m4ag9-e5ysf-xywgg-mrtjk monthly 0.5 2025-08-01 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/7559b0c6-600b-413e-ada2-aceb626687b0/GREEN.MDBRvector.transparent2024.png Grant Opportunities - Million Dollar Bike Ride 2024 Pilot Grant Program - LOI https://www.orphandiseasecenter.med.upenn.edu/grants/caskgrantprogram-ekh78 monthly 0.5 2024-03-01 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/3fce084c-444f-4ed2-986a-822a0a12db91/Cask.png Grant Opportunities - Project CASK Grant Program 2024 Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-s5pw9-aypt6-f8edy-wfltb-zkfcw monthly 0.5 2024-02-19 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2024 CDKL5 Pilot Grant Program Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/caskgrantprogram monthly 0.5 2024-03-01 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/3fce084c-444f-4ed2-986a-822a0a12db91/Cask.png Grant Opportunities - Project CASK Grant Program 2024 https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-2024 monthly 0.5 2024-01-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2024 CDKL5 Pilot Grant Program LOI https://www.orphandiseasecenter.med.upenn.edu/grants/iqsec2fullapp monthly 0.5 2024-01-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/3ae1e6ae-72e3-45dc-972d-27a0d6a848d5/IQSEC2+Logo+FINAL.png Grant Opportunities - IQSEC2 Research and Advocacy Foundation Research Grant Program 2023 full application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm-m4ag9-e5ysf-xywgg monthly 0.5 2023-09-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/5e1a53b7-55f9-47f4-9d5b-4522d8a789ce/MDBR-Logo-diecut-allstyles1_Die+Cut+Logo+%28blue%29.png Grant Opportunities - Million Dollar Bike Ride 2023 Pilot Grant Program - LOI (Copy) https://www.orphandiseasecenter.med.upenn.edu/grants/iqsec2loi monthly 0.5 2023-11-13 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/3ae1e6ae-72e3-45dc-972d-27a0d6a848d5/IQSEC2+Logo+FINAL.png Grant Opportunities - IQSEC2 Research and Advocacy Foundation Research Grant Program 2023 https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm-m4ag9-874bl-mmkgm monthly 0.5 2024-09-27 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1688742530096-BRNS3FWDPOSHKKQ7RCGU/MDBR-Logo-diecut-allstyles1_Die+Cut+Logo+%28blue%29.png Grant Opportunities - Million Dollar Bike Ride 2023 Pilot Grant Program - Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm-m4ag9-e5ysf monthly 0.5 2023-09-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/5e1a53b7-55f9-47f4-9d5b-4522d8a789ce/MDBR-Logo-diecut-allstyles1_Die+Cut+Logo+%28blue%29.png Grant Opportunities - Million Dollar Bike Ride 2023 Pilot Grant Program - LOI https://www.orphandiseasecenter.med.upenn.edu/grants/bowfoundationloi monthly 0.5 2023-03-09 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/410be620-7f46-47c8-93e9-014b5a14bd33/bow+foundation.jpg Grant Opportunities - Bow Foundation 2023 Grant Program Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-s5pw9-aypt6-f8edy-wfltb monthly 0.5 2023-03-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2023 CDKL5 Pilot Grant Program Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-s5pw9-aypt6-f8edy-amreh monthly 0.5 2023-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2023 CDKL5 Pilot Grant Program LOI https://www.orphandiseasecenter.med.upenn.edu/grants/adldgrant monthly 0.5 2023-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/714f0d28-4ba8-4c7a-bc4d-beb25dbdde9b/ADLD.png Grant Opportunities - ADLD Center Grant Program Full Application (by invitation only) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - ADLD Center Grant Program Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm-m4ag9-874bl monthly 0.5 2022-10-31 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606768499050-LVSVWFCCX8DD15C6PDVW/MDBR+2-3.png Grant Opportunities - Million Dollar Bike Ride 2022 Pilot Grant Program - Full Application https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm-m4ag9 monthly 0.5 2022-10-21 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606768499050-LVSVWFCCX8DD15C6PDVW/MDBR+2-3.png Grant Opportunities - Million Dollar Bike Ride 2022 Pilot Grant Program - LOI https://www.orphandiseasecenter.med.upenn.edu/grants/mps1grant2022 monthly 0.5 2022-09-15 https://www.orphandiseasecenter.med.upenn.edu/grants/bloomsyndromegrant monthly 0.5 2022-04-26 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - Bloom Syndrome Grant Program https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-s5pw9-aypt6 monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2022 CDKL5 Pilot Grant Program (Copy) https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-s5pw9-aypt6-f8edy monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2022 CDKL5 Pilot Grant Program Full Application (by invitation only) https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program-s5pw9 monthly 0.5 2022-02-10 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2022 CDKL5 Pilot Grant Program https://www.orphandiseasecenter.med.upenn.edu/grants/jumpstart-research-tools-matching-grant-program monthly 0.5 2021-12-16 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Grant Opportunities - JUMPSTART RESEARCH TOOLS MATCHING GRANT PROGRAM - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610577912340-X5REYY3M60G4W33J9AX2/Coriell.png Grant Opportunities - JUMPSTART RESEARCH TOOLS MATCHING GRANT PROGRAM - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608138897081-H84GK910LEW25Y5EKUOP/JAX.jpg Grant Opportunities - JUMPSTART RESEARCH TOOLS MATCHING GRANT PROGRAM - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg-b7zlm monthly 0.5 2022-08-15 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606768499050-LVSVWFCCX8DD15C6PDVW/MDBR+2-3.png Grant Opportunities - Million Dollar Bike Ride 2021 Pilot Grant Program https://www.orphandiseasecenter.med.upenn.edu/grants/cdkl5-programs-of-excellence-pilot-grant-program monthly 0.5 2021-03-12 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607964912543-RIYEM4ESWCTH7UZJLCDN/loulou.jpg Grant Opportunities - 2021 CDKL5 Pilot Grant Program https://www.orphandiseasecenter.med.upenn.edu/grants/event-five-pk3yg monthly 0.5 2021-08-09 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606768499050-LVSVWFCCX8DD15C6PDVW/MDBR+2-3.png Grant Opportunities - Million Dollar Bike Ride 2020 Pilot Grant Program https://www.orphandiseasecenter.med.upenn.edu/grants/event-one-wrjnb monthly 0.5 2022-06-06 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants daily 0.75 2026-03-25 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/a-novel-approach-for-the-treatment-of-iqsec2-mediated-disease-g4m7a-pxamh-78p8p-3kk2s-gkchg-knh8x-bbmjc-9hnp5 monthly 0.5 2025-08-04 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/a-novel-approach-for-the-treatment-of-iqsec2-mediated-disease-g4m7a-pxamh-78p8p-3kk2s-gkchg-knh8x-bbmjc monthly 0.5 2025-08-04 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/a-novel-approach-for-the-treatment-of-iqsec2-mediated-disease-g4m7a-pxamh-78p8p-3kk2s-gkchg-knh8x monthly 0.5 2025-08-04 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/a-novel-approach-for-the-treatment-of-iqsec2-mediated-disease-g4m7a-pxamh-78p8p-3kk2s-adtwk monthly 0.5 2025-08-04 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/a-novel-approach-for-the-treatment-of-iqsec2-mediated-disease-g4m7a-pxamh-78p8p-3kk2s-gkchg monthly 0.5 2025-08-04 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https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/aso-therapy-in-cdkl5-deficiency-disorder-nm85j-dcxel-y3xpc-err59-6te39-ghjm5-g5gam-wl7jc-zmwys-tfekz-fje64-6l2cm monthly 0.5 2023-04-20 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/aso-therapy-in-cdkl5-deficiency-disorder-nm85j-dcxel-y3xpc-err59-6te39-ghjm5-g5gam-wl7jc-zmwys-tfekz-fje64-mxcen-94zym monthly 0.5 2023-04-20 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/aso-therapy-in-cdkl5-deficiency-disorder-nm85j-dcxel-y3xpc-err59-6te39-ghjm5-g5gam-wl7jc-zmwys-tfekz-fje64-fgwhe-3xnbw monthly 0.5 2023-04-20 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/aso-therapy-in-cdkl5-deficiency-disorder-nm85j-dcxel-y3xpc-err59-6te39-ghjm5-g5gam-wl7jc-zmwys-tfekz-fje64-fgwhe-2fbfc monthly 0.5 2023-04-20 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/aso-therapy-in-cdkl5-deficiency-disorder-nm85j-dcxel-y3xpc-err59-6te39-ghjm5-g5gam-wl7jc-zmwys-tfekz-fje64-gkmmz monthly 0.5 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0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2024-1 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2024-2 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2020-1 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/APBD monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/DUP15Q monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/SETBP1 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/FA monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/FD monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/NPC monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/CRB1 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/Pitt+Hopkins monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/FH monthly 0.5 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https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/NBIA monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2023 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2022 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2021 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2020 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2023-1 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/LGDALMI monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2019 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/HEM monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2018 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2017 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2016 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2015 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/2014 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/Bow+Foundation monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/Castleman monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/CLA monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/CTNNB1 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/tag/NBIABPAN monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/events daily 0.75 2026-02-18 https://www.orphandiseasecenter.med.upenn.edu/events/lysosomal-storage-disease-data-sharing-workshop-webinar-series monthly 0.5 2025-05-30 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/8c5fd65b-95ec-4814-b963-ca60be2e857f/Picture1.png Events - Lysosomal Storage Disease Data Sharing Workshop, Webinar Series - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606236158822-2762314JNFDPDGAK3C9W/odc-logo-color.jpg Events - Lysosomal Storage Disease Data Sharing Workshop, Webinar Series - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/events/hypopara-reasearch-foundation-think-tank-9bt69 monthly 0.5 2023-12-12 https://www.orphandiseasecenter.med.upenn.edu/events/cacna1a-research-readiness-think-tank monthly 0.5 2023-12-12 https://www.orphandiseasecenter.med.upenn.edu/events/cask-related-disorders-virtual-think-tank monthly 0.5 2023-12-12 https://www.orphandiseasecenter.med.upenn.edu/events/2023-rare-disease-day monthly 0.5 2023-03-01 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/15dffb07-f3f4-44c3-ad0e-23c1d81bef09/Logo-Rare-Disease-Day.jpg Events - 2023 Rare Disease Day - Learn More For more information about Rare Disease Day, visit www.rarediseaseday.org https://www.orphandiseasecenter.med.upenn.edu/events/rare-drug-development-symposium-1 monthly 0.5 2023-04-10 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/6db89651-546b-4239-8c06-a23126942101/rdds-theme-logo.jpg Events - RARE Drug Development Symposium - Join us May 1-3, 2023 in Philadelphia, Pennsylvania for the RARE Drug Development Symposium https://www.orphandiseasecenter.med.upenn.edu/events/pathway-to-gene-therapy-approval-in-latin-america monthly 0.5 2022-12-22 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/0f94f2fc-849f-44f5-bfc5-7e4ca10e9398/Pic+4.png Events - Pathway to Gene Therapy Approval in Latin America - Make it stand out The Orphan Disease Center and Jim Wilson MD, PhD in São Paulo, Brazil, discussing the Pathway to Gene Therapy Approval in Latin America. https://www.orphandiseasecenter.med.upenn.edu/events/million-dollar-bike-ride-jf89a monthly 0.5 2026-02-18 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/56ec4eb6-9ac8-47c3-b80f-0788692da2e5/MDBR+2026+Reg+Final.png Events - Million Dollar Bike Ride 2026 https://www.orphandiseasecenter.med.upenn.edu/events/rare-drug-development-symposium-cw9j2 monthly 0.5 2022-12-07 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1615485092522-UD57R53S3U7R4NKA9LH1/2020-12_DG_GG_drug-development-logo-v1-768x434.png Events - RARE Drug Development Symposium https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1619544627599-SOJQM32T975879JKYWPG/global-genes-logo-registered-highres-.jpg Events - RARE Drug Development Symposium - The Orphan Disease Center co-hosts the Rare Drug Development Symposium in partnership with Global Genes. https://www.orphandiseasecenter.med.upenn.edu/events/bloom-syndrome-think-tank monthly 0.5 2021-11-24 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1633530718664-HKUH9ZZLMUP505RRXUN4/jumpstartlogo.jpg Events - Bloom Syndrome Think Tank - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/events/mdbr-virtual-yoga-class monthly 0.5 2021-03-25 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1616701166207-ZV4UW491J4IXXW7MB34Z/yoga.PNG Events - MDBR Virtual Yoga Class https://www.orphandiseasecenter.med.upenn.edu/events/million-dollar-bike-ride monthly 0.5 2022-01-25 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1613485905162-FU2H5SFO7UEHTVVRHUXK/MDBR2021+Poster-02.jpg Events - Million Dollar Bike Ride 2021 https://www.orphandiseasecenter.med.upenn.edu/events/rare-drug-development-symposium monthly 0.5 2022-01-25 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1615485092522-UD57R53S3U7R4NKA9LH1/2020-12_DG_GG_drug-development-logo-v1-768x434.png Events - RARE Drug Development Symposium https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1619544627599-SOJQM32T975879JKYWPG/global-genes-logo-registered-highres-.jpg Events - RARE Drug Development Symposium - The Orphan Disease Center co-hosts the Rare Drug Development Symposium in partnership with Global Genes. https://www.orphandiseasecenter.med.upenn.edu/events/10th-anniversary-celebration-orphan-disease-center monthly 0.5 2021-03-04 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1611087786682-KR2LTQDL4JSBK7DD1VLU/10yr+logo-final.png Events - 10th Anniversary Celebration - Orphan Disease Center https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1611345978431-AAMW2H2K385KVFHM57MG/DEV-FY21-30050-ODC.Opening.Graphic-Social-Invite-v3.png Events - 10th Anniversary Celebration - Orphan Disease Center https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1613582509647-SHQIKHLWF56W90A7CL1R/Orphan-Disease-Center-1-768x563.jpg Events - 10th Anniversary Celebration - Orphan Disease Center - “This reality is one that Wilson and the ODC have fully embraced, recognizing that while the essential science behind developing cures for the world’s toughest diseases may happen in the monastic confines of a laboratory, the funding, promotion and scalable delivery of those cures demands an all-hands-on-deck effort.” https://www.orphandiseasecenter.med.upenn.edu/events/champ1-research-foundation-family-meeting monthly 0.5 2021-01-13 https://www.orphandiseasecenter.med.upenn.edu/events/hypopara-reasearch-foundation-think-tank monthly 0.5 2023-12-12 https://www.orphandiseasecenter.med.upenn.edu/events/zc4h2-think-thank monthly 0.5 2021-01-13 https://www.orphandiseasecenter.med.upenn.edu/events/rare-disease-day monthly 0.5 2021-03-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610485420541-T7A2WRGNLJNKOULISOZP/RDD+2021.jpg Events - Rare Disease Day https://www.orphandiseasecenter.med.upenn.edu/events/ftd-key-opinion-leader-meeting monthly 0.5 2020-12-16 https://www.orphandiseasecenter.med.upenn.edu/events/event-four-9t48c monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/events/event-one-r2jrt monthly 0.5 2020-12-15 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608060359933-4U8DGB6YRBVQW3O21PJ5/bionj.png Events - September Webinar Series https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608060403312-QIBSYFNNVP7SXJVZXI6D/life+sciences.png Events - September Webinar Series https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608060440305-VL1RTLP15QOAEZA8X0ZO/aaih.png Events - September Webinar Series 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https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608084170771-OOSWER97XF5NGK6VY72N/brazil2.jpg Events - South Brazil MPS Symposium 2019 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608084171327-2HMXFCTDBMFOHXPZJMJ8/brazil3.jpg Events - South Brazil MPS Symposium 2019 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608084251675-YTEO7YJSKZVCFQ7FWU74/brazil12.jpg Events - South Brazil MPS Symposium 2019 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608084258380-USOLVGFN8T7GDP3IXGU3/brazil.jpg Events - South Brazil MPS Symposium 2019 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608084267600-S43L4QA2BI2EKD1BC3LM/brazil4.jpg Events - South Brazil MPS Symposium 2019 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608084275607-X4WNSLSF9ZVTHYXE0OGE/brazil6.jpg Events - South Brazil MPS Symposium 2019 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608084292993-L5PJ7OM2EHQMKNIN1FE8/brazil7.jpg Events - South Brazil MPS Symposium 2019 https://www.orphandiseasecenter.med.upenn.edu/events/event-three-8bay9 monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/events/event-two-fx5k4 monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/events/event-one-8jz7d monthly 0.5 2024-03-19 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1615485092522-UD57R53S3U7R4NKA9LH1/2020-12_DG_GG_drug-development-logo-v1-768x434.png Events - Rare Drug Development Symposium Rare Drug Development Symposium April 30 - May 1, 2024 https://www.orphandiseasecenter.med.upenn.edu/news daily 0.75 2023-05-16 https://www.orphandiseasecenter.med.upenn.edu/news/bdaz1k2hy9eq5wfqznio1dfexnqz2v monthly 0.5 2023-05-16 https://www.orphandiseasecenter.med.upenn.edu/news/1c9phh987ws9wz72iwrxs9ae4munor monthly 0.5 2022-02-01 https://www.orphandiseasecenter.med.upenn.edu/news/checkrare-panel-discussion-data-silos-are-hindering-rare-disease-research monthly 0.5 2021-09-21 https://www.orphandiseasecenter.med.upenn.edu/news/dr-james-m-wilson-and-alex-karnal-establish-the-nonprofit-institute-for-life-changing-medicines-to-identify-and-develop-next-generation-medicines-for-rare-diseases monthly 0.5 2021-09-21 https://www.orphandiseasecenter.med.upenn.edu/news/blog-post-title-two-fr7jy monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/news/blog-post-title-three-7dwc9 monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/news/blog-post-title-one-k4nks monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/news/blog-post-title-four-3zgbb monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/news/c4q49358knaig35svkvhp141wmaaau monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/news/ebwszd5img75m0spbp166cv5gtjw73 monthly 0.5 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022 daily 0.75 2022-02-28 https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-one-rl8f9 monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/9f8b0838-6ab6-4061-89a8-5bff78555106/MeghanBayer.PNG RDD Submissions 2022 - Meghan Bayer - Winthrop University - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-dgkfl monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/6c7ec02e-b528-4f4f-aaa9-c29af5661437/DanaLaor.PNG RDD Submissions 2022 - Dana Laor - Tel-Aviv University - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-ahtht monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/2e42651d-f99b-427f-90dc-0db7ea782868/KusholGupta.PNG RDD Submissions 2022 - Kushol Gupta - University of Pennsylvania - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-zxm7d monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/3874eb2c-b430-48a5-a897-982aec67cb1f/Jeanette+Erdmann.PNG RDD Submissions 2022 - Jeanette Erdmann - University of Lübeck - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-8835e monthly 0.5 2022-02-25 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/4fa7a760-63b7-4755-91d9-7240c49bd6db/MaurizioGiustetto.PNG RDD Submissions 2022 - Maurizio Giustetto - University of Turin - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-y4c77-enndf monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/504eeafc-b378-41ca-ac10-97fd42ad9e8f/RuthNapier.PNG RDD Submissions 2022 - Ruth Napier - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-two-53ch5 monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/a9151023-4d02-46dc-9c6e-eb6e552ec317/UriTabori.PNG RDD Submissions 2022 - Vanessa Bianchi - The International Replication Repair Deficiency Consortium - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/7e51d035-6981-4f1c-a799-208f23bff12b/UriTabori1.PNG RDD Submissions 2022 - Vanessa Bianchi - The International Replication Repair Deficiency Consortium - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-four-g2n7e monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/aa980996-50f3-47ae-ba17-46e0a790cad4/CamilaDuarte.PNG RDD Submissions 2022 - Camila Duarte - Instituto de Errores Innatos del Metabolismo, Pontificia Universidad Javeriana - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-etcys monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/7591b229-3fcf-4e51-8feb-19075f96d9ed/KoolendeVriesSyndrome.PNG RDD Submissions 2022 - Koolen-de Vries Syndrome Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-8w6c4 monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/63d8a459-faef-46fe-9cd5-bf86428b72e4/LaraJanssen.PNG RDD Submissions 2022 - Lara Janssen - VU University Amsterdam - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-rjwgy monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/15b7598b-ad8f-48f0-8202-2922efeb7b23/CarinPapendorp.PNG RDD Submissions 2022 - Carin Papendorp - Brown University - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s monthly 0.5 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/64482b58-239e-4b71-8c0d-2774dd49a1b0/QianCong.PNG RDD Submissions 2022 - Qian Cong - Harvard School of Dental Medicine - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/blog-post-title-three-p8c2s-y4c77 monthly 0.5 2022-02-25 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1be50596-0bfa-4320-8eb3-88333b592cdb/KelseeParry.PNG RDD Submissions 2022 - Kelsee Parry - University of Utah Hospital - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/category/RDD monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/category/2022 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/tag/RDD monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/tag/2022 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/rdd-submissions-2022/tag/Winner monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects daily 0.75 2024-02-08 https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j-8jtfb-fedfc-83bmm monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/fc8eb4c8-e946-4b3a-b435-70acb48e431d/TESS.jpg GCSX Projects - Tess Research Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j-8jtfb-fedfc monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607967774374-JO6BMU9LJUTL1UMGH72L/Syngap.jpg GCSX Projects - SynGAP Research Fund - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j-8jtfb monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1618955040195-FW9T2KAJ0CC8DFYS0DP1/Logo+-+SDSA+-+large+presentation+size.png GCSX Projects - Shwachman-Diamond Syndrome Alliance - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-enhzh monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610576085755-1F49J1GWA2QZMCAYOH1O/REN%2Bmember%2Bbadge.jpg GCSX Projects - Rare Epilepsy Network - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/35228a21-3cab-4ca1-bf8b-b612545c7f26/PRIMARY-Project-8p-Logo-Vector-Export-High-Rez-800x1024.png GCSX Projects - Project 8p - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8 monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/84297a28-0d31-4d34-9bfa-4bb094e91eeb/Cure+Mito-Logo-02.png GCSX Projects - CURE MITO FOUNDATION - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-bc6zm monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/5b435925-2ff4-4a3a-8cb5-adf8da75c426/CMCD%2BFoundation_Option2.png GCSX Projects - CMCD Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1628693619266-06OFMQ7QI80DTRSDHHED/ARRE+Foundation.jpg GCSX Projects - ASXL RARE RESEARCH ENDOWMENT - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/714f0d28-4ba8-4c7a-bc4d-beb25dbdde9b/ADLD.png GCSX Projects - ADLD Center - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j-8jtfb-fedfc-83bmm-t4szj-9ajfh monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1649b8e5-3dc8-49ea-a1bf-1d66ea944b90/tbrs.png GCSX Projects - Tatton Brown Rahman Syndrome (TBRS) Community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j-8jtfb-fedfc-83bmm-t4szj-fxryz monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/2d22f5c0-d979-4b6d-9764-6fc2efb41bf0/med13l.png GCSX Projects - MED13L Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j-8jtfb-fedfc-83bmm-t4szj-ytczl monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/944adf68-4bf4-4400-acf4-8029003be576/koolendevries.png GCSX Projects - Koolen-de Vries Syndrome Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j-8jtfb-fedfc-83bmm-t4szj-hptps monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/47b9f18f-b535-4301-8f5e-78b73dc263c2/fox+orange.jpg GCSX Projects - FOXG1 Research Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/blog-post-title-one-7x58k-hb88y-exzy8-ea45j-8jtfb-fedfc-83bmm-t4szj monthly 0.5 2024-02-08 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/104b5154-ebf8-4e3d-b37a-4541141e65c0/ago2.png GCSX Projects - AGO Alliance - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/category/GCSX monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/category/2023 monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/gcsx-projects/tag/GCSX monthly 0.5 https://www.orphandiseasecenter.med.upenn.edu/resources daily 0.75 2020-12-16 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608138401595-3VGYPVKWM3N7LA2GMHKD/Miracle+Flights.jpg Rare Disease Community Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608138897081-H84GK910LEW25Y5EKUOP/JAX.jpg Rare Disease Community Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608139344128-H7QUSACBN7YT20WI4NEZ/rare+genomes.jpg Rare Disease Community Resources - Rare Genomes Project If you or a loved one is still genetically undiagnosed, join a patient-driven research study to discover the genes underlying your family’s condition. Please visit raregenomes.org to learn more and say “count me in” today. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607965052697-1RD3P4YIQRXRJQA40EEP/fast.jpg Rare Disease Community Resources FAST Summit & Gala https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608139721304-7XT7AW9YWRAFKQHORKPR/the+mighty.jpg Rare Disease Community Resources What Doctors Failed to Tell Us About Raising a Child with a Disability https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607965257776-ABP6JOK03F31UAQ5WEGH/global.jpg Rare Disease Community Resources Global Genes https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608138633796-D8K4JYFUDZ7732PBIRR3/NORD.png Rare Disease Community Resources NORD https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608138683453-U1JFGY6C624BH0WBDGGY/Eurodis.jpg Rare Disease Community Resources Eurodis https://www.orphandiseasecenter.med.upenn.edu/home daily 1.0 2026-02-18 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606241991326-7OI263LSGK4SF40G4RX8/DSC_4366-2.jpg Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606242058022-W460G6BZXPSN5MKYBU2R/DSC_3968.jpg Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606242074891-DX6WRODZTDXPWC9S75KR/DSC_4395.jpg Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606242100877-K4IGCG5FUV1LKVLSSID6/DSC_2480-2.jpg Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/53570f82-633d-45ac-8a38-775f15b2fa8c/2026+CDKL5+Socials.png Home - CDKL5 Pilot Grant Program The ODC and Loulou Foundation CDKL5 Pilot Grant Program provides a one‐year grant for $150,000.00 (total cost) to support research related to CDKL5 Deficiency Disorder (CDD). The number of awards is not fixed, and may vary. LOI due February 27, 2026 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/859a45e6-04ae-4080-8555-64716e2ca11b/MDBR+2026+Reg+Final.png Home - Registration for the 13th annual MDBR is now open! Join the rare disease community at UPenn on June 13 to raise money for rare disease research. Let’s make an impact together. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606763129502-RWKL0QFHTNBTCBXJHRO9/Brynn+flip.png Home - In the United States, orphan diseases represent a collection of disorders that afflict fewer than 200,000 individuals for any single disease type. There are more than 7,000 distinct orphan diseases. In the aggregate, over 25 million people in the United States suffer substantial morbidity and mortality from orphan diseases. Despite this huge number, research in most disease types has lagged far behind other major areas due to a combination of technological and funding limitations. The Orphan Disease Center of the University of Pennsylvania exists to facilitate and fund research, and develop transformative therapies for rare diseases with significant unmet need. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610402458625-XXZSQYFE25CBG4NVU5CW/grant%2Blight%2Bbulb%2B2.jpg Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1620673599104-VI70LC329GZIG3ISE88G/jumpstartlogo.png Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606768520759-PPPQ6N3IT4KEV9LTWK9H/MDBR%2B2-3.jpg Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606770174951-0WOCPNFXNKUYVV9ZBD3N/Linear-Nerve-Molecule.jpg Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606770234131-HA4K7Z06F5CLUKUQFSOT/Green%2BNerve.jpg Home https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606770720753-QLH2KE7FME0T2W579JRL/Multi-color-molecule.jpg Home https://www.orphandiseasecenter.med.upenn.edu/our-team1 daily 0.75 2026-02-27 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606849197152-YH0GMTGXSGR3E8JIXSC3/Iesha_SCD_3.jpg Our Team - Our Team The Orphan Disease Center includes a passionate team of scientists and professionals who are committed to accelerating research, developing therapies, and bettering the lives of those living with a rare disease. It is with extensive experience, heartfelt dedication and enthusiasm that our team strives to meet the needs of a grossly underserved community. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1fe71c80-cfc2-4c98-82d9-dcf37046192a/Marsh_Headshot2.png Our Team - Make it stand out Co-Director https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/8e6386f5-e49f-4314-b718-fe3e794f759b/Musunuru_Kiran_large.jpg Our Team - Make it stand out Co-Director https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/8763ff7c-a4e4-4e63-9224-628e834975ae/Headshot+DR.jpg Our Team Director, JumpStart Program https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606850195220-7AGKBE972R5VZRQB3D1J/Dan.jpg Our Team Director, CDKL5 Program of Excellence https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606852160497-OO9I5HPRZXJQRLGMK51V/cara.jpg Our Team Director, Program of Excellence in MPS and Lysosomal Storage Disease Advanced Therapies https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/8fe5fade-8aba-4968-ae41-6063ded402b0/jasmine.png Our Team - Make it stand out Program Manager https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/af9206e2-9646-40d3-a968-3b323e8c18b6/Theresa+Berger+Headshot+January+2024+%281%29.JPG Our Team - Make it stand out Clinical Research Coordinator, CDKL5 Registry https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/6779ce6a-0d1b-4371-9aef-6459b1e91782/Leslie+Silverman+Headshots+-+January+2024+%288%29.JPG Our Team - Make it stand out Program Specialist https://www.orphandiseasecenter.med.upenn.edu/mission-impact daily 0.75 2022-05-06 https://www.orphandiseasecenter.med.upenn.edu/careers daily 0.75 2024-03-14 https://www.orphandiseasecenter.med.upenn.edu/programs-of-excellence daily 0.75 2022-05-06 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606931652334-MKR7Y06JOIFJS8DBGKLJ/Green%2BNerve.jpg Programs of Excellence - CDKL5 Deficiency Disorder (CDD) CDKL5 deficiency disorder (CDD) is characterized by epileptic seizures which begin within days or months of birth, and by severe developmental delay affecting neurological functions such as motor control, speech, and cognitive ability. This disorder is caused by mutations in the CDKL5 gene which reduce or eliminate expression or function of the CDKL5 protein, an enzyme that is important for normal brain function. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606932738723-4MMR79O2I0BIMFKSP0VO/Multi-color-molecule.jpg Programs of Excellence - Mucopolysaccharidoses Mucopolysaccharidoses (MPSs) are a family of lysosomal storage diseases, each of which is caused by the absence of a critical enzyme needed for normal lysosomal function. These lysosomal enzymes are needed to degrade mucopolysaccharides, now called glycosaminoglycans (GAGs), as well as other cellular debris. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606933638909-YMOOQBIBDL5BDYE0SREM/cj8w1686v0fepjbtu4jejn8hg-gene.one-half.jpg Programs of Excellence - Rare Disorders of Immune Dysregulation The immune system is a multifaceted set of organs, cells, and proteins that work to prevent infection. Abnormalities in the immune system can result in dysregulation, which results in the immune system attacking the body. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606935476174-PI8IYN2UNDQ7K0APBUXB/what+pathway32-1.png Programs of Excellence - Castleman Disease Castleman disease describes a group of rare immune system disorders characterized by enlarged lymph nodes, flu-like symptoms, and dysfunction of vital organs such as the liver, kidneys, and bone marrow. Castleman disease patients demonstrate features similar to cancers like lymphoma and autoimmune diseases. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606935970358-B0SKB73SZKXG77HIQ9B7/blue%252Bdna.jpg Programs of Excellence - Beckwith-Wiedemann Syndrome Beckwith-Wiedemann syndrome is a genetic and epigenetic disorder commonly characterized by overgrowth and increased risk for cancer. Aspects include large birth weight and length; enlarged kidneys, liver, pancreas, and/or tongue; one side of the body growing more than the other side; and an increased risk of developing certain cancers during childhood. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606936215666-203GZKZO8VB6YTI4N5Y9/cj98nbtdo0sy4jbtu9fltkcdv-pennchopcombo.one-half.jpg Programs of Excellence - Pilot POE Grants The ODC Pilot Programs of Excellence Grant helps Penn and CHOP investigators to engage rare disease communities (patients, clinicians, industry) and build appropriate resources across these communities to improve standards of care or therapeutic development. https://www.orphandiseasecenter.med.upenn.edu/2025-cdkl5-awardees daily 0.75 2025-05-15 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606944866985-GE6DGRMFKIGCCJ1Y22S5/LLF+Logo.png 2025 CDKL5 Awardees https://www.orphandiseasecenter.med.upenn.edu/cdkl5 daily 0.75 2024-11-13 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607121803136-Q08AVKO1Q5HGC39JOU2R/loulou.png CDKL5 - Partnership The ODC has partnered with the Loulou Foundation to create the CDKL5 Program of Excellence (PoE) within the ODC. The PoE is tasked with driving the development of effective therapeutic strategies for the treatment of CDKL5 Deficiency Disorder (CDD). Since 2016, the ODC and the Loulou Foundation have awarded and managed more than 75 grants totaling over $11 million to institutions around the world. This research support has served to advance the understanding of CDKL5 under normal and pathological conditions, to generate the necessary tools for disease modeling and drug discovery, and to advance therapeutic development in the strategic domains described above. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607120595083-L6F62C7EV69U5I5F5PPH/CDKL5_Registry_logo.jpg CDKL5 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607121495804-22QOYFYFRUO7VFIXQ7C8/cdkl5+alliance.png CDKL5 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607121646659-GU8XBFE02PIFU3TK8JMG/ifcr.jpg CDKL5 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607121707889-Y2X0ET6D1QO543EDBGA6/telethon.png CDKL5 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607008844149-0C0GP6YGJE8XH60NKGWY/symposia.jpg CDKL5 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607008876580-FNZFLDOQ6WGOTKTBDP3Y/grant%2Blight%2Bbulb%2B2.jpg CDKL5 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607008912526-6U7KS268JL1PJDMS7JGP/blue%2Bgrant%2Bfigure.jpg CDKL5 https://www.orphandiseasecenter.med.upenn.edu/faqs-1 daily 0.75 2022-05-06 https://www.orphandiseasecenter.med.upenn.edu/liver-metabolic daily 0.75 2020-12-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607024836118-4OT59P0AGVG3KEJNAN33/HoFH+Infographic+FINAL+27MAR2018.png Liver Metabolic Disorders - One of the ODC's research areas is the liver metabolic disorder known as Homozygous Familial Hypercholesterolemia (HoFH). Please reference the graphic to the left To learn more about HoFH and the potential for gene therapy. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607025139243-FGACIZV850VEHJ9ENFMS/Crigler+Najjar+Infographic.png Liver Metabolic Disorders - Crigler-Najjar and the potential for Gene Therapy https://www.orphandiseasecenter.med.upenn.edu/research-areas daily 0.75 2022-05-06 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607018557473-6YWJOUXTTOJQQC52GRP0/Brain%2Bblue.jpg Research Areas - Pediatric Epilepsy & Neurodevelopmental Disorders Pediatric epilepsies represent a complex group of seizure disorders with diverse outcomes during development and later in life. Some forms of pediatric epilepsy associate with severe developmental delay or regression, autism-like characteristics, intellectual disability, and motor dysfunction, while the underlying cause of these disorders can vary from genetic abnormalities, injury, or unknown causes. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607018866592-TR5V27L0R951GQW1AFNN/Lysosome.jpg Research Areas - Lysosomal Storage Disorders Lysosomal Storage Disorders are a group of diseases in which the function of the lysosome, the part of the cell that degrades and ‘recycles’ cellular debris, is impaired. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607019006015-98YGT9FM1DXAFO7D2UJW/Spine.jpg Research Areas - Motor Neuron Disorders Motor Neuron disorders (MNDs) are a group of diseases that severely affect the function of motor neurons. Motor neurons are cells located in the brain and spinal cord that primarily control voluntary movement through their axonal connections to muscles. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607019129625-BHDVNZCDMIMB3GMIRLER/purple%2Bliver.jpg Research Areas - Liver Metabolic Disorders A number of rare liver metabolic disorders are caused by a mutation in a single gene that either damages the liver directly or effects a vital function that impairs other organs. Without adequate treatments, complete or partial liver transplantation is often the only treatment option for severe liver metabolic disorders. https://www.orphandiseasecenter.med.upenn.edu/pediatric-epilepsy-neurodevelopment daily 0.75 2020-12-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607019538764-CZKTK97TD4S926E7IV7W/orange%2Bsynapse.jpg Pediatric Epilepsy Neurodevelopment https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606931652334-MKR7Y06JOIFJS8DBGKLJ/Green%2BNerve.jpg Pediatric Epilepsy Neurodevelopment https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606935970358-B0SKB73SZKXG77HIQ9B7/blue%252Bdna.jpg Pediatric Epilepsy Neurodevelopment https://www.orphandiseasecenter.med.upenn.edu/angelman-syndrome daily 0.75 2020-12-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607020829398-45370XLPPOTN334A2533/fast.jpg Angelman Syndrome - “Most people have never heard of Angelman syndrome (AS), but scientists believe that AS has the greatest potential for being cured when compared to other neurogenetic disorders.” https://www.orphandiseasecenter.med.upenn.edu/rett-syndrome daily 0.75 2020-12-03 https://www.orphandiseasecenter.med.upenn.edu/castleman daily 0.75 2020-12-03 https://www.orphandiseasecenter.med.upenn.edu/amyotrophic-lateral-sclerosis daily 0.75 2020-12-03 https://www.orphandiseasecenter.med.upenn.edu/spinal daily 0.75 2020-12-03 https://www.orphandiseasecenter.med.upenn.edu/mucopolysaccharidoses daily 0.75 2020-12-09 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607007727396-6P0FOIEYU3POGU0N5LLY/MPS+I+Infographic+FINAL+27MAR2018.png Mucopolysaccharidoses https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607008844149-0C0GP6YGJE8XH60NKGWY/symposia.jpg Mucopolysaccharidoses https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607008876580-FNZFLDOQ6WGOTKTBDP3Y/grant%2Blight%2Bbulb%2B2.jpg Mucopolysaccharidoses https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607008912526-6U7KS268JL1PJDMS7JGP/blue%2Bgrant%2Bfigure.jpg Mucopolysaccharidoses https://www.orphandiseasecenter.med.upenn.edu/lysosomal-storage daily 0.75 2020-12-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606932738723-4MMR79O2I0BIMFKSP0VO/Multi-color-molecule.jpg Lysosomal Storage https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607022721267-3B3VFR2K1IGW4C4MQMEB/GM1.png Lysosomal Storage https://www.orphandiseasecenter.med.upenn.edu/motor-neuron-disorders daily 0.75 2020-12-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607023866425-XRHE1KR2EF8NUE2KYP9W/Linear-Nerve-Molecule.jpg Motor Neuron Disorders https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607023960446-R6VFLBE4SAPM4FDYEJSL/red%2Bspine.jpg Motor Neuron Disorders https://www.orphandiseasecenter.med.upenn.edu/criglernajjar daily 0.75 2020-12-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607025391710-AWYGTW2E41Q5TM03RQ2U/Crigler+Najjar+Infographic.jpg Crigler-Najjar - Crigler-Najjar and the potential for Gene Therapy https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1606932738723-4MMR79O2I0BIMFKSP0VO/Multi-color-molecule.jpg Crigler-Najjar https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607022721267-3B3VFR2K1IGW4C4MQMEB/GM1.png Crigler-Najjar https://www.orphandiseasecenter.med.upenn.edu/gm1-gangliosidosis daily 0.75 2020-12-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607023033342-EVSBKLF1C8KSTXYVAL2X/GM1+Infographic_FINAL_10Sep19.png GM1 Gangliosidosis https://www.orphandiseasecenter.med.upenn.edu/grant-opportunities daily 0.75 2023-07-27 https://www.orphandiseasecenter.med.upenn.edu/grant-faqs daily 0.75 2025-08-05 https://www.orphandiseasecenter.med.upenn.edu/awardedodcgrants daily 0.75 2025-05-15 https://www.orphandiseasecenter.med.upenn.edu/mps-symposia daily 0.75 2020-12-07 https://www.orphandiseasecenter.med.upenn.edu/mdbr-2019-awardees daily 0.75 2020-12-09 https://www.orphandiseasecenter.med.upenn.edu/affiliated-programs daily 0.75 2022-05-06 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607978506263-KWU29ZVF8IRI92R9TTAU/precision+medicine.png Affiliated Programs Dan J. Rader, MD https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607978066283-3KM4S87Z4Y9KM5P5786R/CHOP.jpg Affiliated Programs Amy Waldman, MD https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607978177110-RHCZX4UW9D5FWIB31M28/Penn+Carot.jpg Affiliated Programs Jean Bennett, MD, PhD https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607978580673-HZ3SFGHHM73LJJKFZJGG/ifopa.png Affiliated Programs Frederick S. Kaplan https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607978264382-Y1A5X2PYZ6DO5L1GFSCJ/CEGIR.png Affiliated Programs https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607978288108-7RTCCP705Q4HNGYOM6Q1/clinical+research.png Affiliated Programs https://www.orphandiseasecenter.med.upenn.edu/million-dollar-bike-ride daily 0.75 2026-02-09 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/62dc60a9-4bd8-4795-8053-4ab7bb15423d/2023.06.10_MDBR10_Social_JBP249.jpg Million Dollar Bike Ride - The Million Dollar Bike Ride brings over 800 cyclists and volunteers to Penn’s campus to ride either 13, 34, or 72 miles starting in the city, and ranging across the Greater Philadelphia region. In twelve years, the MDBR’s 30+ teams have raised over $22 million to fund research grants on the diseases they represent. The ODC ensures that 100% of the funds received goes to the teams and not overhead. https://www.orphandiseasecenter.med.upenn.edu/september-webinar-series-resources daily 0.75 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/past-events daily 0.75 2020-12-16 https://www.orphandiseasecenter.med.upenn.edu/september-recorded-sessions daily 0.75 2020-12-15 https://www.orphandiseasecenter.med.upenn.edu/contact-us daily 0.75 2024-04-10 https://www.orphandiseasecenter.med.upenn.edu/odc-disease-resources daily 0.75 2024-05-10 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610384120527-43PGL4DXKU5NL86X35H2/Drug+Development.jpg ODC Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610384184147-E5EIQKRNJVTW8GAO8KIS/Challenges+drug+development.jpg ODC Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610384478869-46M15JVFGZ7Z0QOY8HVR/Krabble.jpg ODC Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610384625359-YZK3YM5DU1K9TN2EFMND/GM1+Infographic_FINAL_10Sep19.png ODC Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610384768191-8IULLYG60ATZWPCMS9GP/Crigler+Najjar+Infographic.png ODC Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610385801874-5WYHN4C4MFOPQAL6QKDZ/MSUD+info.png ODC Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610385947069-X43T1HCXECURPSO3MOKQ/MPS1.jpg ODC Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610385991716-WDXCDQYAGO9SEPKSY2A0/HoFH+Infographic+FINAL+27MAR2018.png ODC Resources https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/368f8026-2d12-46c1-a67e-61c93ce93846/ADNL-x2.png ODC Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/jumpstart-symposia daily 0.75 2021-01-13 https://www.orphandiseasecenter.med.upenn.edu/upcoming-events daily 0.75 2022-03-21 https://www.orphandiseasecenter.med.upenn.edu/news-1 daily 0.75 2021-01-14 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608139721304-7XT7AW9YWRAFKQHORKPR/the+mighty.jpg News What Doctors Failed to Tell Us About Raising a Child With a Disability https://www.orphandiseasecenter.med.upenn.edu/jumpstart-resources daily 0.75 2023-12-11 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1631124569647-QVY0NBKHFE26RX2SR2OL/jumpstart+program+dotssmall.png Jumpstart Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1938cc80-fa52-4d52-b28b-0f75edb5b7a7/Rare-together-1-e1652716714491.png Jumpstart Resources HypoPARAthyroidism patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive HypoPARAthyroidism Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1629219871238-XULOQ1ZYB8FADR7CX15I/fox.png Jumpstart Resources FOXG1 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1629122352549-VOS8J8FO5R7HRZY70OJG/SHANK2_color_696_312+copy.jpg Jumpstart Resources The SHANK2 Foundation is dedicated to providing researchers with the data needed to accelerate the development of treatments for SHANK2 disorders while raising awareness of these ultra-rare diseases and providing support to affected families. Learn more about the foundation and sign up for our Patient Registry and Natural History Study (both free of charge to participants). https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/d24b9524-4e4a-4d96-b1df-662b65d40cc3/syngap-research-fund-incorporated_processed_5bfe5112b2d83d4767ff462d768a9a5c2e6df666736933785d1da0506c76fafc_logo.png Jumpstart Resources SynGAP Research Fund (SRF) is excited to partner with Ciitizen on a next generation, digital SYNGAP1 Syndrome Natural History Study. How it works: No clinic visits required Clinical data will be collected from patient’s health records, organized and summarized, free of charge Caregivers retain full control of patient’s health records With your consent, clinicians, researchers and biopharma can access anonymized data to aid in research Available worldwide for patients with medical records in English Onboarding to the Ciitizen platform requires less than 10 minutes of caregiver time https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/850cf111-f9a6-493d-9a25-fcf4f3257115/Asset+1BPAN+Logo+400ppi.jpg Jumpstart Resources BPAN Warriors is thrilled to announce that the RARE-X BPAN Federated Data Platform for Patients and Researchers is live. Having a robust database will allow BPAN Warriors and our global BPAN and NBIA Patient Advocacy Communities to generate more interest from clinicians, researchers and drug developers that we need, in order to help discover a treatment specific for BPAN. This parent-led research foundation, BPAN Warriors, has partnered with Ciitizen for f their groundbreaking BPAN Digital Natural History Study (NHS). The BPAN NHS aims to break down the barriers to patient participation and accessibility in the current natural history study model, while accelerating rare disease drug development. Learn more and sign up here. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1610578583913-2JVNR96EJZS24QRF9RZZ/patient+worthy.png Jumpstart Resources https://www.orphandiseasecenter.med.upenn.edu/mdbr-2020-grant-awardees daily 0.75 2021-01-26 https://www.orphandiseasecenter.med.upenn.edu/10th-anniversary-recordings daily 0.75 2021-03-03 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1614694414036-UZ5UOW2IECWJ8UNHA8EO/10yr+logo-final.png 10th Anniversary Recordings https://www.orphandiseasecenter.med.upenn.edu/general-3 daily 0.75 2021-07-08 https://www.orphandiseasecenter.med.upenn.edu/jumpstart-grants2 daily 0.75 2021-10-12 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1634045890683-89LT20Q2AHGY282YK4SD/jumpstart+program+white-03.png JumpStart Grants (old) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/mdbr-2021-grant-awardees daily 0.75 2022-01-06 https://www.orphandiseasecenter.med.upenn.edu/rare-disease-day-2022 daily 0.75 2022-02-28 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/e82b2d1b-8fcf-4e4a-b846-e2953549eb8d/Logo+Rare+Disease+Day.png Rare Disease Day 2022 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/jumpstart-grants daily 0.75 2024-02-27 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1634045890683-89LT20Q2AHGY282YK4SD/jumpstart+program+white-03.png JumpStart Grants - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/9835bf6d-6bf1-4d84-97f4-0a4d965fa8ca/JumpStart1.png JumpStart Grants - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/21ac1054-2fcb-43a6-99bf-c830e2518df1/ZC4H21.png JumpStart Grants - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/c6b74438-bf76-43f0-9412-c208f89167e8/Hypopara.png JumpStart Grants - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/924bc844-410e-46e5-bbff-1c346a50e60e/bloom.png JumpStart Grants - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/fec1dda2-fafa-4f50-a416-8a597ac517c2/grant+assistance+program.png JumpStart Grants - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/zc4h2 daily 0.75 2022-02-16 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1634045890683-89LT20Q2AHGY282YK4SD/jumpstart+program+white-03.png ZC4H2 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/jumpstart-tools daily 0.75 2022-08-10 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1634045890683-89LT20Q2AHGY282YK4SD/jumpstart+program+white-03.png JumpStart Tools - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1607716947698-XH3NJFTLTVFSE9K7H41D/Coriell.png JumpStart Tools - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1608138897081-H84GK910LEW25Y5EKUOP/JAX.jpg JumpStart Tools - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/hypoparathyroidism daily 0.75 2022-02-16 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1634045890683-89LT20Q2AHGY282YK4SD/jumpstart+program+white-03.png Hypoparathyroidism - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/bloom-syndrome daily 0.75 2022-08-10 https://images.squarespace-cdn.com/content/v1/5fbd2cd686a75170665fde3e/1634045890683-89LT20Q2AHGY282YK4SD/jumpstart+program+white-03.png Bloom Syndrome - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.orphandiseasecenter.med.upenn.edu/mdbr-2022-grant-awardees daily 0.75 2023-01-13 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