Tag: RARE Blog

A total of 62 posts are filed under RARE Blog
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… Continue Reading
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… Continue Reading
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… Continue Reading
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… Continue Reading
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… Continue Reading
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… Continue Reading
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… Continue Reading
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