
Eosinophilic Esophagitis….it’s a mouthful. For a while, my daughter called it “E-something” when trying to explain to others about her … [more here...]
Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions

Eosinophilic Esophagitis….it’s a mouthful. For a while, my daughter called it “E-something” when trying to explain to others about her … [more here...]

More than three million people in the United States suffer from epilepsy at an estimated cost of 15.5 billion annually. In the United States, more … [more here...]

Read Stacey's Original Story Here. Hello to those who suffer from this horrible, debilitating and painful disease. My update since I posted last … [more here...]

Help us strengthen the rare disease community's voice on Capitol Hill by taking three minutes to ask your member of Congress to join the Rare Disease … [more here...]

I have Ehlers-Danlos syndrome. One name. A thousand problems. It started when I was born. The doctors said I was a "floppy" baby--which … [more here...]

NIH Budget Sequestration Cuts Impact The National Institutes of Health (NIH) has published figures detailing how dramatically the federal budget … [more here...]

I first wrote about Abby here. I was encouraged to give an update about Abby because so much has happened since this was published in August! On … [more here...]
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