04/18/2025
Good Morning💜 Eosinophilic Family Coalition
I’m coming to you with an urgent plea as Eosinophilic Research is at risk. Please see all information below & take the actions listed. The future of Eosinophilic Disease research is at risk. Please share. Watch video for more insight. In comments, will list APFED & CURED for more resources. Take Action now.
Dear CURED Families, Professionals, and Advocates,
We are reaching out today with an urgent plea for action. In an alarming and unforeseen move, the National Institutes of Health (NIH) has withdrawn the 5-year renewal application for the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), the only federally funded research and clinical care network for EGID patients in the United States.
This withdrawal was not due to scientific merit but rather a minor administrative oversight that had not previously been enforced.
Regrettably, CEGIR is not alone. The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) has suffered the same fate, further jeopardizing progress in rare disease research.
Thousands of rare disease families are now at risk. The implications are staggering:
Clinical studies and trials face indefinite delays or cancellations.
Families may lose access to EGID specialists at NIH-supported centers.
Pioneering diagnostic and therapeutic research risks grinding to a halt.
The centralized infrastructure for EGID studies in the U.S. is in danger of collapse.
Without intervention, this could be the beginning of widespread setbacks for rare disease programs.
NIH contacts have informed us that all appeals have been exhausted, with this decision being imposed “from the top down.” If we fail to act now, a dangerous national precedent could take hold, threatening rare disease research everywhere.
We need your help urgently:
Call all four of the Rare Disease Congressional Caucus Co-Chairs... Tell them we need the CEGIR and FCDGC applications reinstated and reviewed at the April 22, 2025, NIH Final Scientific Review meeting.
Rep. Gus Bilirakis (R-FL): 202-225-5755
Rep. Doris Matsui (D-CA): 202-225-7163
Sen. Roger Wicker (R-MS): 202-224-6253
Sen. Amy Klobuchar (D-MN): 202-224-3244
Contact your member of Congress... Find them here
Ask them to urge NIH Director Dr. Jay Bhattacharya to reinstate the application before April 22nd.
Share this alert widely... Reshare on social media, forward this newsletter, and activate your personal and professional networks. We need loud, fast, and unified support.
Families & Professionals: Are you willing to speak with the media?
We are gathering personal stories and professional perspectives for national coverage.
If you have:
· Participated in a CEGIR trial or study
· Traveled to a CEGIR site between 2015–2024
· Worked closely to provide care and research support to families
Please email the CURED Foundation: Ellyn or Shay
This week is critical. Please don’t wait.
We know this is difficult news to process. But we are NOT giving up. We are fighting not just for individuals with EGIDs or CDG, but for the future of rare disease research across the country.
Please stand with us. The clock is ticking.
In unity and urgency,
Marc E. Rothenberg MD, PhD
