It’s time to get ready for Rare Disease Day 2022!

With #RareDiseaseDay on February 28, February is the perfect month to join together with the IFOPA and rare disease organizations around the world to raise awareness of the 6,000 rare diseases.

Ways to Share Your Rare in February: 

  1. Frame your Facebook profile picture for #RareDiseaseDay - Search for "IFOPA Rare Disease Day 2022"


  2. Raise awareness by sharing important rare disease facts which will be available on the IFOPA’s Facebook, Twitter, Instagram and LinkedIn pages the week of February 21

  3. Be a part of the worldwide campaign when you use the hashtags #cureFOP and #RareDiseaseDay when making your FOP and rare disease posts

  4. Every year thousands of events are organized around the world during the month of February to recognize Rare Disease Day. This year's events are virtual so anyone can participate. Check out these upcoming events:  

    • February 22, 1 - 2 pm EST - EveryLife Foundation hosts Virtual Rare Disease Week on Capitol Hill February 22 — March 3, 2022 bringing together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. There will be lots of activities including a Rare Disease Congressional Caucus Virtual Briefing. US only. More information and registration at https://everylifefoundation.org/rare-advocates/rare-disease-week/

    • February 22, 5 pm EST - NORD is hosting the 4th Annual Rare Disease Day at Nationwide Children’s to raise awareness of rare diseases and support patients and families affected by them. There is special programing for children from 4-5 pm, followed by invited talks on Research, Advocacy, and Patient Support, and a candid, interactive patient and family discussion panel. This event is free and open to the public, including patients, their families and caregivers, healthcare providers, and research professionals. The event is all-virtual. Please register at www.nationwidechildrens.org/rare-disease-day

    • February 25, 1 pm EST – NORD is hosting the Rare Disease Day Symposium at the Quinnipiac Frank H. Netter MD School of Medicine. Since 2015, the symposium, under the direction of Quinnipiac University faculty and students engaged in rare disease scholarship and advocacy, has served as an opportunity for patients, family members, and researchers to share their stories and promote education, awareness, and advocacy. It is also an accredited continuing medical education (CME) activity for physicians. Click here to register. 

    • February 28 — March 3 - 24 Hours of Rare is the only virtual event that celebrates the global rare disease community with content programmed by the rare disease community. Events start on February 28 with a global celebration of the rare disease community, straight-up at noon, time zone by time zone. Don’t miss the amazing work being done by rare advocates, patients, medical professionals, and researchers around the world as we celebrate the global rare disease community, live from time zones around the world. Come back on March 1st for a two-day series of panels, breakouts, workshops, and networking sessions focused on the topics and issues impacting the global rare disease community. More information and registration at https://24hoursofrare.com/

    • February 28, 10 am to 6 pm EST - Virtual Rare Disease Day at the National Institutes of Health (NIH). More information and registration here

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