From Our Affiliates

Tag: _Policy

A total of 10 posts are filed under _Policy
093014-Photo-JointTransCommerceHearing3-PB
Legislation Introduced in House to Provide Incentives for Rare Disease Drug Development
On Nov. 20, 2014, Rep. Gus Bilirakis (R-FL) introduced the “Orphan Product Extensions Now Accelerating Cures and Treatments Act of 2014”… Continue Reading
Investment
Could B-Corporations Be a New Investment Model for Non-Profits?
Maureen Mcarthur Hart Reports: The Cystic Fibrosis Foundation (CFF) announced last week that the organization has sold for $3.3 billion its… Continue Reading
Lobbying_Rare
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
Screen Shot 2014-11-12 at 1.53.37 PM
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
8781?itok=K6-O2q8q
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
everydaylifefoundation
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
Free-Medicine
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

Follow us on Twitter