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.

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Ways to "Share Your Rare" in February:

  1. 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

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

  3. 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-March 3 — EveryLife Foundation hosts Virtual Rare Disease Week on Capitol Hill 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. For US residents only. Click for more information and registration

    • February 22, 4 to 7:30 pm EST (special program for children 4-5 pm) — The National Organization or Rare Disorders (NORD) is hosting the 4th Annual Rare Disease Day at Nationwide Children’s Hospital to raise awareness of rare diseases and support patients and families affected by them. Following the children's program, there are 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 entirely virtual. Click here to register

    • 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 27, 6 pm EST — Rare Disease Foundation is hosting a fun family Rare Disease Day event. Beloved author Deborah Katz of Rare is Everywhere will be speaking about her book and her insights into talking with kids about rare diseases. We will also interview 12-year old Felix Townsin, author of Don't Floss Your Toes! Enjoy family-friendly art and movement activities to enhance this special day. Great for kids and kids at heart! 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 1 for a two-day series of panels, breakouts, workshops and networking sessions focused on the topics and issues impacting the global rare disease community. Click for more information and registration

    • February 28, 10 am-6 pm EST — Virtual Rare Disease Day at the National Institutes of Health (NIH). 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

    • March 4, 9 am- 4:30 pm EST — 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 “Sharing Experiences in Rare Diseases Together.” This public meeting will include six interactive panel discussions. Panelists, including current and former FDA staff, patients and caregivers, will speak about their experiences in:
      • Enhancing product development using a public-private partnership approach for a rare disease
      • Reviewing gene therapies for neurocognitive disorders in children 
      • Engaging in review processes that led to approval of two drugs to treat rare tumors
      • Using patient input and benefit-risk assessments in approval of devices for rare orthopedic conditions
      • Interacting with FDA
      • Developing initiatives to improve FDA’s work in rare diseases

      Panel discussions will be moderated and allow panelists to provide individual perspectives. Panelists will be able to respond to attendee questions using a chat feature. 
      Click for more information and registration

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