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 been touched by the power—and more often than not, the powerless feeling of colliding with the complexities of rare disease. At this year’s RARE Patient Advocacy Summit you’ll take your first steps towards being unstoppable as Zenzaga CEO, Keegan Johnson, brings … [more here...]

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 Berns, who … [more here...]

Immune Deficiency Foundation: September Retreat in Portland

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Join The Immune Deficiency Foundation for a Weekend Retreat for People Living with PI! This year's event takes place in Portland, Oregon on … [more here...]

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 information and … [more here...]

Now Online: Taking Control: Gaining Independence as a Young Adult with a Rare Disease

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Transitioning to adulthood is hard enough. Doing it with a rare disease? That may require some guidance. So, Global Genes has put together a new RARE … [more here...]

Parents Share Hope, Concern Over the Future for Daughter with Niemann Pick Type C


They say life can throw a curveball at you at any time. As a mother of a child with Niemann Pick Type C (NP-C) I know how that feels. Our curveball … [more here...]

An Allergic Reaction Turns into a Life-Threatening Rare Disease: Stevens Johnson Syndrome


One Saturday in April 2013, I woke up on the futon in my sister’s living room and felt like I had pink eye. I was working as a CNA at the Mass Eye … [more here...]