The Gift of Global Genes: Provide Hope to Families of Rare Disease This Holiday


New parents dream about watching their babies walk for the first time and saying their first word. They dream about clapping in the crowd as their children graduate high school, get accepted to college and find a job that fulfills them. They want their children […]

Managing Blog Editor, Ilana Jacqueline, Speaks with Boca Raton Observer About Global Genes


Managing Editor of the Global Genes RARE Blog and patient advocate, Ilana Jacqueline, spoke with South Florida’s Boca Raton Observer Magazine this month for their November “Giving Issue.” “Rare and genetic diseases affect one in 10 Americans, 30 million people in the United States, and 300 […]

NIH Supports Global Genes Project and Jeans/Genes Awareness Efforts


Over the past two years, the Global Genes Project efforts have been highly visible at the NIH for the annual World Rare Disease Day events.  In 2012, we presented Dr. Francis Collins and Dr. Steve Groft with a Rare Pictures of Hope™ photo book made […]

Paola’s Life with Multiple System Atrophy (MSA)


Last week I went back to high school. My friend and co-worker, Paola Vermeer, a scientist studying head and neck cancer at Sanford Research, was presenting to junior high and high school students during their school assembly. This was not just any presentation. Paola, or Pay, […]

February 29, 2012 – A Celebration of Unity


The Month of February During the month of February,  much of the American population will be celebrating historical events, special interest groups and campaigns.  Some of these include Black History,  American History, Children’s Dental Health, and American Heart Month.  Internationally recognized events in February include […]



Looking for a way to participate in Rare Disease Day Events? Don’t miss these Rare Disease Day events in DC!   Monday, February 27, 2012 RDLA Luncheon Meeting & Conference Call (Host: Rare Disease Legislative Advocates) 12:30 – 2:00p.m. at 750 9th Street NW, Suite […]

Relapsing Polychondritis – My Chances of Winning The Lottery Are Better


I am a 43 year old woman with Relapsing Polychondritis. 1 in 3.5 Million people are diagnosed with this disease. My favorite saying is, “I couldn’t just win the lottery??”  I was diagnosed by my allergist who recognized my swollen ears, a hallmark of this […]