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

October 30, 2013

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 million people globally. But the doctors who diagnosed me failed to mention that, as I sat, stunned in a hospital bed trying to wrap my mind around the two rare diseases I’d been labeled with: Postural Orthostatic Tachycardia Syndrome and Primary Immune Deficiency Disease.

“Finding others who shared my predicament was a challenge, so after a weeks of trying to help myself and others around me understand my disease, I started a blog called

“Not long after I wrote my first few posts, my mother, a producer for the national morning talk show on Lifetime (“The Balancing Act”) mentioned an organization she was working with who advocated for the cause of rare disease,” says Ilana Jacqueline.

To read more, visit the magazine’s online version. The issue hits stands on Nov. 1st.

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