"Rare diseases" affect more than 30 million Americans. But RFK, Jr. has "postponed" (without scheduling a future date) the annual two day meeting on this subject co-hosted by the NIH & FDA.
"More than 800 rare disease advocates will already be in D.C. for Rare...
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https://www.axios.com/2025/02/25/rare-disease-meeting-delayed-hhs?utm_source=newsletter&utm_medium=email&utm_campaign=newsletter_axiosvitals&stream=top
"More than 800 rare disease advocates will already be in D.C. for Rare...
1/4
https://www.axios.com/2025/02/25/rare-disease-meeting-delayed-hhs?utm_source=newsletter&utm_medium=email&utm_campaign=newsletter_axiosvitals&stream=top
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🔹️These diseases include cystic fibrosis, Huntington's disease, muscular dystrophy, sickle cell anemia, & Turner's syndrome.
🔹️"Just 5% of rare diseases have FDA-approved treatments, and research assessing new drugs'...
🔹️A spokesperson for EveryLife Foundation for Rare Diseases said: "The cancelation of this important event for our community underscores...