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Every Life Foundation for Rare Diseases issues end of year action alert

As 2014 comes to a close, we are already preparing for what lies ahead for the rare disease community. Congress has pledged to make biomedical innovation a top-priority in 2015, and it is vital that we use this opportunity to usher in progress for rare disease patients.

 

I’m writing you today with two simple requests:

1. Endorse our Cure the Process 2 Campaign – with this campaign we seek to: provide new incentives for repurposing existing drugs for rare diseases, enable more specialized reviewers to take part in the FDA approval process, and ensure US patients get access to early stage clinical trials.

2. Sign-on to Support the OPEN ACT – The OPEN ACT is the legislative component of Cure the Process, which will incentivize “rare-purposing” to ensure rare disease patients have access to safe, effective and affordable treatments.
You may email mbronstein@everylifefoundation.org to sign-on to the OPEN ACT or endorse the Cure the Process 2 campaign (organizations only). My thanks to those who have already signed (full list below).

 

Thank you very much for your support and have a wonderful holiday season.

 

Sincerely,
Max G. Bronstein
Senior Director, Government & Public Affairs

Cure the Process 2 Endorsing Organizations:

National Tay-Sachs & Allied Diseases Association, Jain Foundation, Noah’s Hope, Cure Duchenne, National MPS Society, Batten Disease Support & Research Association

 

OPEN ACT Signing Organizations: 

National MPS Society, With Purpose, National PKU Alliance, Taylor’s Tale, RASopathies Network USA, Kids v Cancer, Let Them Be Little X2 Inc., Info and Resources for Idiopathic Pulmonary Hemosiderosis (IPH-NET), Noah’s Hope, Mary Payton’s Miracle Foundation, Hope4Bridget Foundation Batten Disease Support & Research Association, Cure Sanfilippo Foundation, Beyond Batten Disease Foundation