Rare disease patient advocates have reason to celebrate today as the House of Representatives passed H.R. 6/the 21st Century Cures by a vote of 344-77
(12 Members did not vote in case you are doing the math!).
You Helped Make it Happen! Rare disease patients, advocates and families across the country, including Global Genes and our network, united to make this happen! Your voices were heard by Congress and the House passage of this landmark legislation is an example of what the rare community can accomplish when we work together!
Throughout the last 16 months that this legislation has been discussed and debated, the rare disease community has submitted comments, participated in briefings, made numerous phone calls, sent emails and made it known to Members of Congress and to the Energy and Commerce Committee that you need this bill. Your actions were heard and made a difference!
Energy and Commerce Committee Chairman Fred Upton and Representative Diana DeGette (D-CO) – who led 21st Century Cures pictured with Max Schill- Rare Patient and up-and-coming Rare Advocate!
What’s great about the bill? H.R. 6 will improve the discovery and development of new breakthroughs and cures for patients with rare diseases and provides increased, guaranteed funding for the National Institute of Health (NIH) and the Food and Drug Administration (FDA) thanks to the patient community’s help to defeat a last minute amendment that jeopardized that funding. The bill also includes the OPEN ACT, which provides exclusivity incentives for rare disease drug development.
Don’t Forget to Say Thanks! Find out how your Member voted on the final bill and please take this opportunity to thank your Member of Congress if he or she voted yes! If your Member voted against the bill, consider it an opportunity to help inform him or her about rare diseases and the value of H.R. 6 for your community. Find your Member’s contact information here.
What’s next? The process now moves to the Senate, which has been working on its own FDA and NIH reforms package to complement the House’s 21st Century Cures Act. So, stay tuned…
Max in Action! Max Schill, who is living with RASopathy called Noonan Syndrome and is the son of parent advocate (and Global Genes advocacy leader) Lisa Shill, has become the face of this legislation! We are so proud of you Max!
Max today in Washington, D.C. with Congressman Brett Guthrie wearing and sharing the Genes Ribbon!
This is a great day for rare disease! Thank you for lending your voices to this critical legislation!
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