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…
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: LEARN MORE:
Here is my edgy view… The healthcare industry is what it is in the United States. How’s that for profundity? We’re not going to change the fact that everyone wants their share of the healthcare dollar to make a buck. However, my reaction to the CEO of United Health Insurance getting shot at point blank…
ERDC submits a letter for the record to the US Senate Finance Committee about the importance of correcting the Orphan Cures Act to ensure rare disease research continues. September 16, 2024 Statement for the Record for Senate Finance Committee, September 17, 2024, Full Committee Hearing “Lower Health Care Costs for Americans: Understanding the Benefits of…
There are so many bad actors in the health care ecosystem that it’s hard to keep track of them all! That’s why we’re here – to try and break down some of these complicated and bloated systems to ensure that you have the information you need – and when you have the energy and time…
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