Link: Senator Hatch’s website   for more information about the Senator

Dear Senator Hatch,

We write today to thank you for your continued leadership on Research, Innovation, and the health of our Nation. Your efforts to support patients and families experiencing rare disease are particularly critical. As you know, 1 in 10 Americans suffers from a rare disease: taken together, rare diseases are not rare and affect all our lives in some way.

As concerned constituents and members of the rare disease community, we seek to raise awareness about critical rare disease issues with policymakers and in particular, your colleagues in the Senate. The issues addressing the rare disease community provide critical lessons for our country: First, as technology enables personalized/precision medicine, rare disease serves as an important stepping-stone in our efforts to responsibly apply innovation to small numbers of patients; Second, research and development for rare diseases have directly led to some of the most meaningful and broadly applicable breakthroughs in medicine, such as the discovery of statins; Finally, and most importantly, patients and families struggling with rare disease represent the best of our nation – these families face hardship most will never understand, yet they continue to work, study, organize, and advocate – we owe it to them to catalyze their incredible efforts.

Given your longstanding interest and commitment to improving health for all Americans, we respectfully request that you take a leading role in the creation of a Senate Rare Disease Caucus and serve as its inaugural chairman. On the House side, the Rare Disease Congressional Caucus (founded in 2009) is co-chaired by Reps. Lance (R-NJ) and Crowley (D-NY), whom are supported by 86 caucus members.

We believe that creating a Senate Rare Disease Caucus will raise awareness about the challenges faced by the rare disease community, highlight the broad benefits of work on rare disease, and shed light on the policy solutions that are urgently needed.

We thank you very much for your past support of policies that advance health for all Americans and we are so grateful for your consideration of this request.

Sincerely,
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