Sending Office: Honorable Andre Carson
Sent By:
Charlie.Arnowitz@mail.house.gov

Deadline: COB Tuesday, February 27

Dear Colleague,

We invite you to join us in sending a letter to leadership urging support for formally designating February 28 as Rare Disease Day, and for addressing the unique challenges facing the rare disease patient community.

Rare diseases affect nearly 30,000,000 individuals nationwide, and each year these individuals and their families celebrate Rare Disease Day to share their stories and educate their communities. Legislation pending in this Congress (H.Res157) would formally
designate February 28 as Rare Disease Day.

Please contact Charlie Arnowitz (charlie.arnowitz@mail.house.gov) in Congressman Carson’s office or Thomas Rice (thomas.rice@mail.house.gov) in Congressman
McCaul’s office to sign on by COB Tuesday, February 27.

Sincerely,

André Carson  Michael McCaul


Dear Leader McConnell, Leader Schumer, Speaker Ryan, and Leader Pelosi:

As you are aware, too many Americans suffer from rare diseases and conditions. Today, almost 7,000 rare diseases affect nearly 30,000,000 individuals nationwide, over half of whom are children. Unfortunately, many rare diseases and conditions, which affect
small patient populations fewer than 200,000, are serious, life-threatening, or lack an effective treatment.

February 28 marks Rare Disease Day, and House Resolution 157 would formally designate it as such. We urge you to support the designation of Rare Disease Day this year. We also encourage you to support additional legislation that would facilitate improved
awareness, education, research, surveillance, diagnosis, and treatment for rare diseases.

Rare diseases cross the medical spectrum, but individuals with rare diseases face some common challenges. In large part due to their limited patient population size, these individuals may have difficulty obtaining an accurate diagnosis, finding physicians
or treatment centers with expertise in their disease, and ultimately finding appropriate treatment options and cures. While over 450 drugs have been approved for the treatment of rare diseases, millions of Americans  suffering from a rare disease have no approved
 treatment options.

For decades, Congress has worked to support advancements in rare disease, with legislation ranging from the Orphan Drug Act to the Food and Drug Administration Safety and Innovation Act to, most recently,  the 21st Century Cures Act. In addition, the Food
and Drug Administration and the National Institutes of Health have made important strides, prioritizing research, development, and approval of treatment targeting rare diseases. Nonetheless, it remains clear that there remains much policymakers can do to further
these critical efforts.

On the last day of February each year, individuals around the world share their stories and educate communities of researchers, health professionals, governments, families, and friends about how rare diseases affect them. Congress should recognize these
efforts, and moreover work to address the many unique challenges facing the rare disease patient community.

For more information on Rare Disease Day, please contact Charlie Arnowitz (charlie.arnowitz@mail.house.gov) in Congressman Carson’s office or Thomas Rice (Thomas.Rice@mail.house.gov) in Congressman McCaul’s office.

Sincerely,

 

Related Legislative Issues

Selected legislative information: HealthCare

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