Upcoming Webinar: Using Successful Online Fundraising Strategies
July 28, 20145:35 am 2 CommentsDate: July 30, 2014 Time: 10:00 am PT / 1:00 pm ET Register here! Online fundraising has made it easier
Author Archives for Hugh Hempel
Head of FDA’s Rare Disease Division Departs, Leaving Agency Looking for New Leader
July 26, 20146:50 am 1 CommentThe US Food and Drug Administration (FDA) is looking for a new leader for its Rare Diseases Program. In an
Patient Advocacy Summit 2014: The Unstoppable Charity
July 25, 20145:49 am Comments Off on Patient Advocacy Summit 2014: The Unstoppable CharityWe all have our reasons. Sons, daughters, parents and friends—it’s a guarantee that anyone managing this sort of charity non-profit
Progeria Research Foundation Featured on Katie Show, Monday July 28th
July 25, 20145:44 am Comments Off on Progeria Research Foundation Featured on Katie Show, Monday July 28thThe Progeria Research Foundation will be featured on The Katie Show Monday, July 28th. The segment will include a moving tribute to Sam
Immune Deficiency Foundation: September Retreat in Portland
July 24, 20146:34 am Comments Off on Immune Deficiency Foundation: September Retreat in PortlandJoin The Immune Deficiency Foundation for a Weekend Retreat for People Living with PI! This year’s event takes place in
Indian Family Hopes to Import Life-Saving Drug for Son with MPS VI
July 24, 20146:14 am 3 CommentsHearing the news that your child has a rare disease is life changing. It takes time to absorb the words
Now Online: Taking Control: Gaining Independence as a Young Adult with a Rare Disease
July 23, 20146:59 am 1 CommentTransitioning to adulthood is hard enough. Doing it with a rare disease? That may require some guidance. So, Global Genes has put
An Allergic Reaction Turns into a Life-Threatening Rare Disease: Stevens Johnson Syndrome
July 22, 20146:52 am 3 CommentsOne Saturday in April 2013, I woke up on the futon in my sister’s living room and felt like I
Undiagnosed with Developmental Milestones, Parents of Noah, 6, Still Search for Answers
July 22, 20146:31 am Comments Off on Undiagnosed with Developmental Milestones, Parents of Noah, 6, Still Search for AnswersOur son, Noah, just turned six. He is a bright, happy boy who loves to swim, read books, and play
The Life of Riley: Even with Four Heart Defects, There is Always Hope
July 21, 20146:48 am Comments Off on The Life of Riley: Even with Four Heart Defects, There is Always HopeAt 16 weeks gestation we were told Riley had severe heart defects. A month later we were sent to a
“One of a Kind” Piece Features Rare Disease in The New Yorker
July 20, 20146:42 am Comments Off on “One of a Kind” Piece Features Rare Disease in The New YorkerMatt Might and Cristina Casanova met in the spring of 2002, as twenty-year-old undergraduates at the Georgia Institute of Technology.
The APOLLO Study: Alnylam Pharmaceuticals Now Recruiting for New FAP Drug
July 19, 20147:53 am 1 CommentThe APOLLO study Alnylam Pharmaceuticals, Inc is currently recruiting participants for the APOLLO study, an international clinical research study designed
