From the EveryLife Foundation

After a multi-year advocacy campaign, President Obama signed the 21st Century Cures Act into law! This bill will dramatically enhance and improve medical research and innovation that will benefit patients with rare diseases for generations to come.

This achievement would not have been possible were it not for the tireless and united advocacy of the rare disease community. We were honored to have a seat at the table for the entire legislative process. We are especially grateful to Representatives Fred Upton (R-MI) and Diana DeGette (D-CO), as well as members of their staff, for incorporating feedback from the rare disease community and for the leadership of Senator Lamar Alexander (R-TN). We must also acknowledge the tireless efforts of Max and Lisa Schill of the RASopathies Network for working with Congress every step of the way.

Looking ahead to 2017, we will have much work to do to ensure that the OPEN ACT and other legislative initiatives to encourage the development of new therapies for rare disease patients gain the support needed to get signed into law.

 

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