Tag: Rare Disease

A total of 346 posts are filed under Rare Disease
Celebrate Your Victory – the 21st Century Cures Act Passes the House!
Rare disease patient advocates have reason to celebrate today as the House of Representatives passed H.R. 6/the 21st Century Cures by a vote… Continue Reading
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Five Ways to Respond to “How Are You Feeling?” When You Have a Rare Disease
When you’re having an off day because of your rare disease (and lets face it: is there ever really an “on” day?) it can be hard to… Continue Reading
Sweatt Lab At UAB Recieves $1.8 Million Grant to Study Pitt Hopkins
Organization: Pitt Hopkins Research Foundation July 7, 2014 — Dr. J. David Sweatt, Professor and Chairman of the Department of… Continue Reading
The Gift of Global Genes: Provide Hope to Families of Rare Disease This Holiday
New parents dream about watching their babies walk for the first time and saying their first word. They dream about clapping in the crowd as… Continue Reading
Tips for Coping with Rare Disease
Though there are over 7,000 rare diseases, there is one thing that all rare disease patients and families have in common- the need to cope… 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
“The Promise In Unraveling The Mysteries Of Rare Diseases” on NPR
Take a listen as NPR delves into the world of rare disease with this story. NEAL CONAN, HOST: This is TALK OF THE NATION. I’m Neal Conan… Continue Reading