Sending Office: Honorable Andre Carson
Original Cosponsors: Carson, Fitzpatrick,
Endorsed By: National Organization for Rare Disorders (NORD)
Rep. Richard Hudson (NC-R-8) and I are introducing a resolution to support the designation of the last day of February as Rare Disease Day. Please join us by becoming an original cosponsor of this important resolution.
Nearly one in ten Americans live with one or more of the roughly 7,000 known rare diseases. More than half of those struggling with rare diseases are children. Unfortunately, many rare diseases and conditions, which affect small patient populations, are
serious, life-threatening, and lack effective treatments. Moreover, as we observe Black History Month, it’s important to know that African Americans and other minorities are especially vulnerable to rare diseases, including Sickle Cell Anemia and Sarcoidosis.
Congress must to do more to help combat rare diseases.
In September 2019, Rep. Hudson and I introduced the Rare disease Advancement, surveillance Research, and Education (RARE) Act of 2019 (H.R. 4228). Our legislation, cosponsored by 57 bipartisan Members of Congress, expands the ability of the National
Institutes of Health (NIH) and Centers for Diseases Control and Prevention (CDC) to study rare diseases by improving treatment, research, and diagnostics of rare diseases through new and existing programs. However, more needs to be done to bring attention
to the unique challenges of those who struggle with rare diseases and celebrate their courage.
Each year, many individuals with rare diseases and their families celebrate Rare Disease Day to share their stories and educate communities of researchers, health professionals, governments, and community organizations about how rare diseases affect them.
Congress should recognize this work, and improve our efforts to address the many unique challenges facing the rare disease patient community.
If you would like to be an original cosponsor, please contact Ryan Shay (email@example.com) by
COB TODAY, February 6th. Please feel free to review the
resolution text. Thank you for your consideration!
e-Dear Colleague version 2.0