It’s time to get ready for Rare Disease Day 2023!

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 over 6,000 rare diseases.


Ways to "Share Your Rare" in February:

    1. Raise awareness by sharing important rare disease videos which will be available on the IFOPA’s Facebook, Twitter, Instagram and LinkedIn pages beginning February 22

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

    3. Light up your house in Rare Disease Day colors at 7 pm (your local time) on February 28. Click to download the illumination toolkit

    4. Download and share the school toolkit for teachers to start the conversation about rare disease with children and teenagers. Click to download the school toolkit

    5. Every year thousands of events are organized around the world during the month of February to recognize Rare Disease Day. 2023 offers both virtual and in-person events making participation easy.   

      • February 24 to March 11, Virtual and In-Person – Statewide Events. Ten states throughout the United States are hosting individual statewide Rare Disease Day events. Click for more information and to register

      • February 27, 9 am to 4:45 pm ET — The FDA is hosting a virtual public meeting to join the global observance of Rare Disease Day. The theme for FDA’s Rare Disease Day is “Intersections with Rare Disease – A Patient Focused Event.” Participants will have the unique opportunity to: 
          • Hear directly from the FDA on initiatives to advance medical product development for rare diseases.
          • Engage with the FDA to provide your perspectives as a patient, caregiver or family member.
          • Understand considerations and challenges associated with clinical trials in small populations.
          • Hear from medical students on rare disease education for medical professionals.

      • Click for more information and registration

      • February 27, 10 to 11 am ET — The Oxford-Harrington Rare Disease Centre is hosting a virtual webinar to join the global observance of Rare Disease Day. The Centre brings together the strengths and capabilities of the University of Oxford in the UK and the Harrington Discovery Institute in Cleveland, Ohio, US. We are united in our mission to deliver cures for rare diseases. OUR MISSION is to deliver new treatments for the over 300 million affected by rare diseases worldwide. Click for more information and to register

      • February 27, 1:30 to 5:30 pm In-Person/2 to 5 pm Virtual – The Broad Institute of MIT is hosting Accelerating Rare Disease Research: Patients as Partners. The event will highlight both patient and research perspectives and includes a panel discussion focusing on partnering with patients to empower progress. The Broad Institute is also proud to host the Beyond the Diagnosis art exhibit each spring, featuring portraits of children with rare diseases. Click for more information and to register

      • February 28 to March 2 — EveryLife Foundation hosts Rare Disease Week on Capitol Hill bringing together rare disease community members from across the United States to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. While the majority of activities are being held in person, there will be a Virtual Briefing from the Rare Disease Congressional Caucus. For US residents only. Click for more information and registration 

      • February 28, 9 am to 5 pm ET — Rare Disease Day at the National Institutes of Health (NIH) (offered virtual and in-person). Each year, the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of the global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect and NIH collaborations that address scientific challenges and advance research for new treatments. Click for more information and registration

      • February 28, 4:30 to 8 pm ET — The National Organization of Rare Disorders (NORD) is hosting the 5th Annual Rare Disease Day at Nationwide Children’s  Hospital to raise awareness of rare diseases and support patients and families affected by them. This year's event will be held in person. Click here to register

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