Rare Disease Patients Advocates Storm Capitol Hill

News provided by

EveryLife Foundation for Rare Diseases

Feb 24, 2015, 09:00 ET

WASHINGTON, Feb. 24, 2015 /PRNewswire-USNewswire/ -- Over 200 patient advocates are in Washington D.C. as part of a global week of advocacy dedicated to raising awareness about rare disease issues. The event coincides with the recent draft release of the 21^st Century Cures initiative - a broad, legislative effort led by Reps. Upton (R-MI) and DeGette (D-CO) to enhance U.S. biomedical research and innovation.

"We applaud Chairman Upton (R-M) and Rep. DeGette for their leadership on the 21^st Century Cures Initiative. There has not been a greater opportunity to advance policy to improve drug development for rare diseases patients since the passage of the Orphan Drug Act more than 30 years ago. We are grateful our advocates have a chance to be a part of the development of this historic legislation," said Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases.

This is the 4^th Rare Disease Week on Capitol Hill and the only lobby day that invites all rare disease patients to join together in one voice. There are more than 30 million Americans affected by nearly 7,000 different rare diseases. "A few years ago rare disease patients were not organized or given a seat at the table; that has all changed," said Andy Taylor, the Legislative Director Congressman Michael McCaul (R-TX).

Advocates will be meeting with congressional staff and representatives to share their daily challenges facing rare disease patients and discuss the legislative proposals included in the 21^st Century Cures Initiative. Advocates will encourage lawmakers to seek bipartisan solutions for patients that could broaden the therapeutic pipeline, speed biomedical innovation, and improve the regulatory process.

Rare Disease Week is made possible through generous support from: AbbVie, Alexion, BioMarin, Biogen Idec, Genzyme, Sarepta Therapeutics, Shire, Vertex, Novartis, Raptor, PhRMA, and Amicus, Audentes, BIO, Onyx Pharmaceuticals, Jazz Pharmaceuticals, Hyperion Therapeutics, Pfizer, Horizon Government Affairs, Prothena, Sigma-Tau and Marathon Pharmaceuticals.

The week's events are hosted and coordinated by Rare Disease Legislative Advocates (RDLA), a collaborative organization designed to support the advocacy of all rare disease groups. RDLA is a program of the EveryLife Foundation for Rare Diseases, a nonprofit dedicated to accelerating biotech innovation for rare disease treatments.

Contact: Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases
Email: [email protected]
Phone: 415-884-0223
Website: www.rareadvocates.org

SOURCE EveryLife Foundation for Rare Diseases