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Upcoming Webinar: Using Successful Online Fundraising Strategies
Date:  July 30, 2014 Time:  10:00 am PT / 1:00 pm ET Register here! Online fundraising has made it easier to raise money to support your… Continue Reading
Head of FDA’s Rare Disease Division Departs, Leaving Agency Looking for New Leader
The US Food and Drug Administration (FDA) is looking for a new leader for its Rare Diseases Program. In an email to staff on 16 July 2014,… Continue Reading
Patient Advocacy Summit 2014: The Unstoppable Charity
We all have our reasons. Sons, daughters, parents and friends—it’s a guarantee that anyone managing this sort of charity non-profit has… Continue Reading
Progeria Research Foundation Featured on Katie Show, Monday July 28th
The Progeria Research Foundation will be featured on The Katie Show Monday, July 28th. The segment will include a moving tribute to Sam… Continue Reading
Immune Deficiency Foundation: September Retreat in Portland
Join The Immune Deficiency Foundation for a Weekend Retreat for People Living with PI! This year’s event takes place in Portland, Oregon… Continue Reading
Indian Family Hopes to Import Life-Saving Drug for Son with MPS VI
Hearing the news that your child has a rare disease is life changing. It takes time to absorb the words you just heard, process the… Continue Reading
Now Online: Taking Control: Gaining Independence as a Young Adult with a Rare Disease
Transitioning to adulthood is hard enough. Doing it with a rare disease? That may require some guidance. So, Global Genes has put together… Continue Reading