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 September 5th-7th at the Embassy Suites in Portland Downtown. Click here to register for Portland. Learn – Connect Be a Part of the IDF Community IDF Retreats are weekend gatherings designed with everyone in the primary immunodeficiency community in … [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...]

New RARE Toolkit, 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...]

Undiagnosed with Developmental Milestones, Parents of Noah, 6, Still Search for Answers


Our son, Noah, just turned six. He is a bright, happy boy who loves to swim, read books, and play on his iPad. He uses a walker, or a wheelchair, … [more here...]

The Life of Riley: Even with Four Heart Defects, There is Always Hope


At 16 weeks gestation we were told Riley had severe heart defects. A month later we were sent to a regional, world class medical center. After an … [more here...]