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Apr
7

Calling all Rare Disease Advocates in Oregon!

Action Alert from AI United: For Rare Disease Advocates who live in Oregon only! Now is your chance to take action.

Please go to this page: find your Senator.

Call or email them and tell them you want them to support SB 874 and that if the committee doesn’t schedule a vote the bill will DIE. Friday is our deadline. If the bill dies people with an AI emergency could be at serious risk!!!

Mar
27

Sign-on to Thank Reps. Upton & DeGette for their Leadership

Rare disease groups are circulating an organizational sign-on letter to thank Chairman Upton (R-MI) and Representative DeGette (D-CO) for leading the 21st Century Cures Initiative, and for incorporating the patient voice. To date, over 40 organizations have signed, including: the EveryLife Foundation, Global Genes, Parent Project Muscular Dystrophy, and the Sarcoma Foundation of America. View the sign-on letter here and email mbronstein@everylifefoundation.org to get signed-on. Please share with your networks so we can send a strong message to Congress!

Mar
27

Ask Congress to Bring Treatments to Rare Disease Patients

The EveryLife Foundation for Rare Diseases is asking individuals to contact Congress and encourage them to co-sponsor the OPEN ACT HR 971. The OPEN ACT is new legislation that provides a vital incentive for industry to repurpose existing therapies for rare disease indications. This legislation has the potential to double the number of treatment options available to the rare disease community. View the action alert here and contact Congress today!

News

Rare Disease Champion Noah Coughlan, Running Across America to Raise Rare Disease Awareness, Stops in DC to Hold Press Conference

Noah Coughlan is on his way to becoming the only American to run across the United States three times. His goal is to bring awareness, support, and positive impact to the rare disease community and the 30 Million Americans and 350 …

Overview of Legislation Benefiting the Rare Disease Community

Passed in the 113th Congress:

  • Gabriella Miller Kids First Research Act: Redirects $12.6 Million in funding from political conventions to the National Institutes of Health (NIH) Common Fund to support transformative research for childhood cancer, autism, Fragile X syndrome

RareVoice Nominee, Julie Flygare featured in article about awards

From: Sleep Review by Associate Editor, Cassandra Perez

Julie Flygare, JD, founder of the non-profit organization Project Sleep and the Narcolepsy: Not Alone campaign, was recently recognized at the RareVoice Awards Gala in Washington, DC, hosted by Rare Disease Legislative …

Senators Hatch (R-UT) & Bennet (D-CO) Introduce Dormant Therapies Act

From the Office of Senator Hatch:

Washington, D.C.—Senators Orrin Hatch, R-Utah and Michael Bennet, D-Colorado, introduced the Dormant Therapies Act, a bill that will establish a new class of pharmaceuticals known as “dormant therapies” eligible for 15 years of data protection.  This …

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