As featured in Newsweek
A patient and the mom who produced a TV show to help find her diagnosis. Together, Ilana Jacqueline and Carri Levy bring both sides of the rare disease journey to your stage.
Our Story
For 19 years, Ilana searched for answers. Recurring infections, chronic pain, and appointment after appointment ended without a diagnosis.
Her mom, Carri Levy, was a television producer. So she did what producers do: she pitched a show. Behind the Mystery: Rare & Genetic Diseases gave Carri a reason to research rare conditions and sit down with the specialists who treat them. One of those conversations connected Ilana with the infectious disease specialist who finally diagnosed her with primary immune deficiency.
Fifteen years later, Behind the Mystery is still on the air, helping undiagnosed patients and families find their way to answers. And Ilana went on to build a career as a patient advocate, consultant, and author of two books with Penguin Random House.
Speaking Topics
Each talk is told from both perspectives: the patient who lived it and the parent who fought alongside her.
Growing Up Rare
What it’s like to grow up sick and undiagnosed, and then medically complex, from school and friendships to identity and independence. An honest look at the years before answers and the life that came after them.
Raising Empowered Daughters
How to raise a girl who asks questions, trusts her own experience, and speaks up, even when the people in the room don’t believe her yet. Lessons for parents, caregivers, and anyone who supports young women navigating healthcare.
Raising a Self-Advocate
The handoff every medical family faces: moving from a caregiver running the appointments to a young adult owning their own care. Practical tools for teaching kids to track symptoms, talk to doctors, and push for answers.
Careers in Rare Disease & Patient Advocacy
How lived experience turned into real careers for both of us, from patient advocacy, pharma, and publishing to television. For patients, caregivers, and students wondering how to turn what they’ve been through into meaningful work.
Formats
- Keynotes for conferences and annual meetings
- Panels and fireside chats, together or individually
- Virtual talks and webinars for organizations and communities
- Breakout sessions and workshops for patient, caregiver, and industry audiences
Great fits include rare disease and patient advocacy conferences, pharma and biotech patient-centricity events, hospitals and health systems, parent and caregiver groups, and universities.
Meet the Speakers
Ilana Jacqueline
Patient advocate, consultant, and content creator with more than 15 years in patient advocacy and healthcare communications. Ilana is the author of Surviving and Thriving with an Invisible Chronic Illness and Medical Gaslighting (Penguin Random House), and speaks to a community of 180,000+ followers about chronic illness, medical gaslighting, and self-advocacy.
Carri Levy
Television producer, LinkedIn voice, and co-creator of Behind the Mystery: Rare & Genetic Diseases. Carri turned her search for her daughter’s diagnosis into a long-running series that has helped countless families living with rare and undiagnosed conditions.
Book Ilana & Carri
Planning a conference, keynote, panel, or virtual event? We’d love to hear about it. Send us your event date, location or format, audience, and the topic you’re interested in, and we’ll get back to you with availability and details.