Who is Ilana Jacqueline?

Author, Influencer, Rare Disease and Chronic Illness Advocate

Ilana Jacqueline is a speaker, best-selling author, advocate and patient advocacy strategist. She is the author of the book Surviving and Thriving with an Invisible Chronic Illness. She is enthusiastic about new media and bridging the gap between patients and the power of collaboration with pharmaceutical and healthcare brands. Though her expertise extends to all chronic health conditions, she has particular personal focus in rare and genetic diseases.

In 2018 New Harbinger Publications published her self-help autobiography, Surviving and Thriving with an Invisible Chronic Illness. The book received rave reviews from patients and critics and was even called, “An important antidote to the dogmatic ‘kale and vitamins’ tone of most ‘self-help’ literature,” by senior writer, Alexa Tsoulis-Reay, at New York magazine.

The story was inspired by the tell-all blog she wrote about her diagnostic odyssey with a rare disease and the advice she gave to other patients– not on how to treat or eat for their disease– but how to continue your life through the all-consuming parts of it. The book touches on ideas for how to keep going through school, work and relationships when hospitalizations and surgeries become a continuous part of your daily schedule.

Despite the severity and chronic nature of her illness, Ilana has continued to find quality of life through her work, writing and volunteering.

She served as the Founder and Editor-in-Chief of Today’s Teen Online, managing the entirely telecommuting staff of 80 writers. She ran her own public relations company, About Time PR from 2010-2016 helping small businesses, TV personalities and athletes to jumpstart their careers with mainstream media mentions.

Later, she began working in the healthcare industry and became the Managing Editor for Global Gene’s The RARE Daily for five happy years. She groomed, motivated, and managed a large team of bloggers and wrote in-depth features and interviews.

She then became the Manager of Patient Advocacy at FDNA. During her time there, she developed the Genomics Collaborative program, which provided a way for patients, advocacy groups, doctors, researchers, labs and other biotechnology companies to utilize the company’s unique technology to further disease understanding. She continued her work with the patient community in her role as Associated Director of Community at Health Union.

In 2018 she joined the boards of RUN (Rare and Undiagnosed Network), HAS (Health Advocacy Summit) and IDA (Invisible Disabilities Association) to help continue her mission to generate awareness and support for those with chronic invisible diseases.

Some publications she has worked with include The Huffington Post, Cosmopolitan, Marie Claire, CrowdMed, AOL, xoJane, xoVain, Everyday Health, WEGO Health, Patient Worthy, MultipleSclerosis.net, Mashable, PharmaPhorum.com, The Boca Raton Observer, Boca Raton Magazine, Boca Delray Life, The Palm Beach Post, The Sun-Sentinel, The Miami Herald, Palm Beach Illustrated, The Happy Herald, Materniteens, and IG Living.

Ilana speaks at medical, patient, and pharmaceutical conferences  as well as consults with companies on how the patient voice can improve the design of healthcare.

She is always looking for her next big adventure.



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