Spread Awareness. Spread Hope.
Join us on February 28 to spread awareness of rare diseases like FOP and increase the number of people fighting for a better future for everyone impacted by these conditions.
How will you participate in Rare Disease Day?
For all rare disease communities, there’s hope in numbers. Participating in Rare Disease Day is a special opportunity to invite our friends, neighbors, coworkers, and loved ones to learn about the rare disease community.
Repost
From February 18-28, find shareable content for Rare Disease Day on our social media accounts.
Share
Our personal stories are often the most powerful tools in spreading awareness
Share your own FOP story with the hashtag #RareDiseaseDay
Give
When you give to the IFOPA, you’re funding vital research to bring us closer to treatments and a cure
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
- 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!
Thank you for advancing our mission!
We’re so grateful for your support this Rare Disease Day and every day.
Together, we can create a more hopeful future for everyone impacted by FOP
Special Thanks to Our Platinum Sponsor
