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Tag: _Policy

A total of 11 posts are filed under _Policy
Photos courtesy of Josh Berg Photography
ACTION ALERT: Dillon’s Law – Helping Medically Fragile Families in America
Dillon’s Law would require Medicaid, Medicare, and private insurance companies to allow medically fragile people to travel with a nurse… Continue Reading
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
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
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 Rare… Continue Reading