Get Ready for #RareDiseaseDay 2021

There are several new ways for you to participate virtually this year

It's February and that means on February 28 we'll be celebrating Rare Disease Day, the annual day set aside to raise awareness of the more than 6,000 rare diseases and the people and families that show incredible resilience despite their genetic diagnosis.

You can celebrate by:

  1. Framing your Facebook profile picture with one of our special #RareDiseaseDay frames (search for "IFOPA Rare Disease Day 2021")

  2. Sharing our rare disease facts the week of February 22

  3. Using the hashtags #cureFOP and #RareDiseaseDay on your social media posts

  4. Participating in a Rare Disease Day virtual event. This year there are lots of virtual events for Rare Disease Day being hosted by organizations the IFOPA is affiliated with – National Organization of Rare Diseases, EveryLife Foundation, University of Pennsylvania Orphan Disease Center and the National Institutes of Health. The virtual nature of this year's events provides an incredible opportunity for FOP families to get involved. We hope you'll take part in at least one of these. Events start February 17 and run through March 5. You can find them at

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