About Ilana

Author – Influencer – Patient Advocate

Ilana Jacqueline is a patient, an advocate and the author of the book, Surviving and Thriving with an Invisible Chronic Illness— she also went nineteen years without a diagnosis. After she was finally diagnosed with a rare genetic disease, she spent the next eleven years battling medical gaslighting as she struggled to find a doctor who knew and understood her unique condition.

While her personal experience as a patient has lent her compassion for what all women are subject to in the exam room—it is her experience as a patient advocate that opened her eyes to the reality that no matter how rare or common the condition may be, it often takes women longer to be heard by the medical community. For five years Ilana worked as the Managing Editor of Global Genes, the largest rare and genetic disease non-profit in the world.

She spent over 10,000 hours interviewing patients and their caregivers on their diagnostic odysseys. She would later go on to work for a series of biotechs like Face2Gene where she created their Genomics Collaborative to help increase disease understanding of ultra-rare conditions. She then entered the world of healthcare marketing— working for companies like WEGO Health and Health Union who partner patients with their pharmaceutical counterparts for insight groups, commercial opportunities, and influencer marketing campaigns.

Her work as a patient influencer has included partnering with companies like Abbot Pharmaceuticals to star in plasma donation PSA’s. Her work in social media (which spans across Instagram, YouTube, TikTok, and Facebook) particularly in the area of medical gaslighting, has garnered the attention of media giants like Dr. Phil and That’s Life. Her TikTok videos have amassed millions of views and been a trigger for women to share their own stories. She is the inspiration behind the Lifetime TV Series, Behind The Mystery: Rare and Genetic

Do you just need a little advice as a patient or a caregiver struggling to stay afloat? I am never unreachable. Shoot me a DM on Instagram and I’ll do my best to connect you with the right resources.

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