7.28.2014 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
7.26.2014 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
7.25.2014 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
7.25.2014 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
7.24.2014 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
7.24.2014 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
7.23.2014 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
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