Rare Disease White Paper Open for Public Comment


By EveryLife Foundation for Rare Diseases NOVATO, CALIF., JUNE 25, 2013 — /PRNewswire-USNewswire/ — The EveryLife Foundation for Rare Diseases assembled a working group drawn from industry and patient organizations to develop a white paper to address the critical scientific issues that would govern a successful […]

Ukraine to Provide Free Medicine to Rare Disease Patients


KIEV, March 12 (Xinhua) — The Ukrainian government vowed to fight rare diseases by providing free medicines to patients starting from 2014, a senior health care official said Tuesday. “Medications used to treat these diseases are unique and very expensive,” Tatiana Bakhteeva, head of the […]

PDUFA Update and Accelerated Approval Program For Rare Diseases


We’re continuing to work on improving PDUFA to allow the FDA additional authority to include rare diseases in the Accelerated Approval Program. After a very successful response from the patient community last week, today we are mobilizing organizations to show their support for allowing the […]

RARE Disease Lobby Day – February 28 – Washington, DC

RDLA is hosting an Advocates Luncheon & Conference Call on September 12, 2012.  RSVP is required for attendance.

RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease Week!  Join us and make sure Congress hears your voice! Lobby […]

New impetus for the U.S. Orphan Drug Act

The United States Orphan Drug Act (US ODA) was passed in 1983, as way to stimulate the development of new therapies for rare diseases. According to the US ODA, orphan drugs are promising therapies intended to treat diseases affecting fewer than 200,000 people in the […]