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Support Strong NIH Funding & Access to Genetic Counselor Services
This year, members of the Pheo Para Alliance community are meeting with lawmakers in Washington, D.C. to advocate for two critical priorities:
1. Strong, sustained NIH funding
The National Institutes of Health (NIH) funds the research that drives earlier diagnosis, better treatments, and life-saving clinical trials for rare diseases like pheochromocytoma and paraganglioma (PPGL). Continued, robust federal investment in NIH is essential to accelerate rare cancer research and improve patient outcomes.
2. The Access to Genetic Counselor Services Act (H.R. 6280)
Up to 30–40% of pheo and para cases have a hereditary component. Genetic counseling helps patients understand inherited risk, determine appropriate testing, interpret complex results, and identify at-risk family members.
However, Medicare does not currently recognize certified genetic counselors as eligible providers for reimbursement. This limits access for many families.
The Access to Genetic Counselor Services Act (H.R. 6280) would:
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Recognize certified genetic counselors as Medicare providers
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Allow reimbursement for medically necessary genetic counseling
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Improve access without requiring genetic testing
This bipartisan, disease-agnostic bill would expand access to critical care for families facing rare and hereditary diseases.
Take Action
It takes less than two minutes.
Please contact your Members of Congress and ask them to:
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Support strong NIH funding in the annual appropriations process
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Cosponsor and support H.R. 6280 (Talking Points)
Your voice helps ensure rare disease patients are seen, heard, and prioritized.
You can help — even from home.
Send a message to Congress through Congress.gov:
Visit https://www.congress.gov/contact and look up your members to send a message in support of NIH funding and H.R. 6280.
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