From Our Affiliates

Tag: _Policy

A total of 8 posts are filed under _Policy
How Lobbying for Rare Disease Research Influences Congress and NIH
By ED SILVERMAN For years, patient advocates and families have lobbied Congress for more funds to combat rare diseases. But to what extent… Continue Reading
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Pulmonary Hypertension Patients Sending Video Selfies to Congress!
Patients are PHighting back and going straight to congress to do so! Individuals impacted by pulmonary hypertension (PH), a rare,… Continue Reading
The Parliament Reports: Greater EU collaboration needed to combat rare diseases
Rare diseases, characterised by their low prevalence, affect between six and eight per cent of the population in the EU, representing… Continue Reading
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… Continue Reading
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… Continue Reading
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… Continue Reading
RDLA is hosting an Advocates Luncheon & Conference Call on September 12, 2012.  RSVP is required for attendance.
RARE Disease Lobby Day – February 28 – Washington, DC
RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and… Continue Reading

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