1. Say NO to cuts to NIH

2. Ensure Biomedical Research Funding (NIH, FDA, CDC)

3. Reauthorize the Rare Pediatric Disease Priority Review Voucher Program at FDA

4. Support the National Plan for Epilepsy

5. Say NO to cuts and caps to Medicaid

See below 5 calls with topics to address

Say NO to cuts to NIH

Hi, my name is [NAME] and I’m a constituent from [CITY, ZIP].

I’m calling to urge [REP/SEN NAME] to support the National Institutes of Health and work to reverse the decision to cap NIH indirect costs, which will severely impact rare disease research and would impact my [self/child/family member].

These cuts will prevent the research that could lead to treatment and/or cures for [my disease] and for millions of Americans living with a rare disease. I urge [Senator/Representative’s Name] to support full NIH funding and reverse these harmful cuts.

Thank you for your time and commitment to medical research.

Ensure Biomedical Research Funding (NIH, FDA, CDC)

Hi, my name is [NAME] and I’m a constituent from [CITY, ZIP].

I’m calling to urge [REP/SEN NAME] to support the essential federal agencies, including NIH, FDA and CDC, which assure timely diagnosis, and are resposible for conducting research and enabling therapy development for rare diseases affecting over 30 million Americans.

The removal of experts at these agencies and reducing their funding will have a devastating and lasting impact on programs that are vital to thousands of rare disease communities. Cuts to these agencies would lead to layoffs, and jeopardize the scientific progress we need to drive innovation and economic growth.

Thank you for your time and commitment to medical research.

Reauthorize the Rare Pediatric Disease Priority Review Voucher Program at FDA

Hi, my name is [NAME] and I’m a constituent from [CITY, ZIP].

I’m calling to urge [REP/SEN NAME] to support the Give Kids a Chance Act of 2025 (H.R. 1262) which includes the Rare Pediatric Priority Review Voucher. The voucher will continue to incentivize companies to develop treatments for rare diseases, which is expensive and challenging due to the small populations affected for each disease.

The voucher will continue to promote drug development for rare pediatric diseases, affecting more than 70% of the rare disease population and will be of no cost to the tax payers.

Thank you for your time and commitment to medical research.

Support the National Plan for Epilepsy

Hi, my name is [NAME] and I’m a constituent from [CITY, ZIP].

I’m calling to urge [REP/SEN NAME] to support the National Plan for Epilepsy Act (S. 494/H.R. 1189), introduced with bipartisan support earlier this month.

By directing the Secretary of Health and Human Services to establish and maintain a National Plan for Epilepsy, this bill will enable necessary federal coordination to achieve better outcomes for people with epilepsy and prioritize development of more effective epilepsy treatments. More than 120 epilepsy organizations have already endorsed the legislation.

Thank you for your time and consideration.

Say NO to cuts and caps to Medicaid

Hi, my name is [NAME] and I’m a constituent from [CITY, ZIP].

I’m calling to urge [REP/SEN NAME] to maintain federal investment in the Medicaid program and do everything in [his/her] power to stop the proposed limits and cuts to this essential program.

70% of patients with rare diseases are pediatric and Medicaid is the most cost-effective way to cover kids. It provides comprehensive healthcare coverage, including preventive services that keep kids healthy. Cuts to Medicaid would be devastating for our families.

Thank you for your time and consideration.

Questions? Email Deborah Requesens