ERDC focuses it’s top policy priorities on systemic issues that impact access to care and treatments for people with rare disease. Specifically we work to:
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Annemarie had no medical debt — until her rare disease diagnosis changed everything. She’s one of 232 people across 39 states who told ERDC what it actually costs to stay alive with a rare disease. The answers were sobering. More than half of respondents (52%) had no medical debt before their diagnosis — the disease…
As a part of our public policy work, we regularly sign onto policy position letters with dozens of other organizations about pending policy issues. Additionally, we create our own letters to state more fully the potential impact of policy on our community. The Senate Finance Committee is proposing a variety of changes with a goal…
FOR IMMEDIATE RELEASE Grand Rapids, MI — February 26, 2026 — Eosinophilic & Rare Disease Cooperative (ERDC) is playing a pivotal role in advancing policies that improve medication research, development, and real-world access for people living with rare diseases. Serving individuals and families affected by more than 40 rare diseases — with a primary focus…
What Are Pediatric Priority Review Vouchers — and Why Do They Matter for the Rare Disease Community? If you’re part of the rare disease community, you may have heard the term Pediatric Priority Review Voucher (PRV). Although the name includes “pediatric,” these vouchers can ultimately impact treatments for both children and adults. What Is a…
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