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.

1 thought on “Managing Blog Editor, Ilana Jacqueline, Speaks with Boca Raton Observer About Global Genes”

  1. I know this if ooff topic buut I’m looking into starting my own weblog and was curious what all
    iss required to get set up? I’m assuming having a blog like yours would cost a
    pretty penny? I’m not very internet savvyy sso I’m
    not 100% positive. Any tips or advice would be greatly appreciated.
    Many thanks

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