Dear Advocate,

You’re receiving this as an organization that has signed-on in support of the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures & Treatments). As you may know, the OPEN ACT was voted on and passed in the House of Representatives last July as part of the 21st Century Cures Act (HR 6). However, the companion legislation in the Senate has since stalled and with the coming election, we are simply running out of time.

Please take one minute to read our letter to the Senate and to sign-on to urge them to take up this vital legislation. Already, Research!America, the National Health Council, Parent Project Muscular Dystrophy, and Global Genes have signed-on, along with dozens of other organizations.

Thanks again for your support. I hope all is well with you!

My best,

Max

Max G. Bronstein, MPP
Senior Director, Advocacy & Science Policy
Phone: 415-884-0223
EVERYLIFE FOUNDATION FOR RARE DISEASES
Accelerating Biotech Innovation for Rare Disease Treatments

About the author

Gina

Gina began working tirelessly as an advocate for the rare and undiagnosed diseases community several years ago after her and her family moved to Utah. She is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN), Chair of Utah Rare, and Utah Ambassador for National Organization on Rare Diseases (NORD).

Gina is currently undiagnosed and the mother of three children with an undiagnosed genetic dysfunction. She is advocating for clinical whole genome sequencing covered by insurance companies and hopes to help rare and undiagnosed families emotionally and financially.

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