WHEN
February 28, 2025 at 2:00pm - 2:30pm Eastern Time (US & Canada)
Mark your calendar for February 28 at 2 PM ET and tune in to our Facebook Live event, A Conversation on Rare Disease!
We’re bringing together two incredible voices in the rare disease community for this conversation facilitated by Hope Newport, IFOPA’s Family Services Manager:
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Dr. Neena Nizar – Executive Director of The Jansen’s Foundation, Patient and mom to two superheroes with Jansen’s Metaphyseal Chondrodysplasia
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Laura Romano – Young Adult Rare Representatives (YARR) Program Manager at EveryLife Foundation for Rare Diseases and Patient with Classical-like Ehlers-Danlos Syndrome
Don’t miss this inspiring discussion on advocacy, resilience, and the power of the rare disease community!
Learn more about Rare Disease Day and RSVP for the Facebook live to be notified when the event begins
