Title: Author and Patient Advocate
Education: Palm Beach State College
Expertise: Patient Advocacy and Influencer Marketing
  • Author, "Surviving and Thriving with an Invisible Chronic Illness"
  • Patient Advocacy Strategist
  • Rare Disease Patient
  • Medical Gaslighting Expert


Ilana Jacqueline is a patient, an advocate and the author— 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.

Ilana's 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, 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.

I work to illustrate how patients can advocate for themselves in the exam room with advice, examples, and guidebooks.


Ilana has been living with a rare disease for 32-years. She worked as the Managing Editor for Global Genes for five years before publishing her first book, Surviving and Thriving with an Invisible Chronic Illness in 2018. Her work as a patient advocate has helped patients with a variety of conditions. She was the creator of the Genomics Collaborative at the Biotech, Face2Gene, and continues to consult with pharmaceutical and healthcare companies on patient issues and education.

About Health

Health, a Dotdash Meredith Brand, is an award-winning online resource for empathetic, trustworthy, and actionable health and wellness information so you can make the best choice for your health. We reach more than 9 million readers a month. We ensure the accuracy of our content by relying on seasoned health journalists, credentialed medical professionals and thorough fact checkers. Learn more about us and our editorial process.

Latest from Ilana Jacqueline