It’s time to get ready for Rare Disease Day 2021!

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 2021"


  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 22

  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. Listen to the IFOPA's special Rare Disease Day podcast "Creating a Story with Impact." The IFOPA will host a special Rare Disease Day podcast interview with Shannon von Felden, Program Director for the Rare Disease Legislative Advocates (RDLA). RDLA is a program of the EveryLife Foundation. Also joining the interview will be Katie Burns, SmithSolve. Watch for the podcast link which will be sent out the week of February 22. 

    The podcast will cover:

    • Why it's important for people with rare diseases to share their story

    • Strategies and proactive steps you can take to prepare your story

    • Advocacy opportunities through Fast Forward for RARE and Rare Across America

  5. 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 17 to 24 - Individual State Rare Disease Day Events sponsored by the National Organization of Rare Disorders (NORD) Rare Action Network. Not every state has an event. More information at https://rareaction.org/events

    • February 22 to March 5 - Rare Across America Every Voice, In Every District, Matters. Make an impact on federal policy from close to your home. Share your rare disease story. Meet other rare disease advocates. More information at https://rareadvocates.org/rareacrossamerica/

    • February 24, 2 to 3:30 pm EST - Fast Forward for Rare Practice Your Pitch Webinar. Patients, caregivers, family members, and friends impacted by a rare disease have stories with impact! By sharing your story, you can help advance important legislation, improve understanding of rare diseases and support the development of new treatments. During this webinar, you'll have the opportunity to meet with Rare Disease Legislative Advocates (RDLA) and communication specialists who can help you craft and refine your story to inspire action. Register now

    • February 25, 1 to 3 pm EST - EveryLife Foundation Rare Disease Congressional Caucus Virtual Briefing More information and registration 

    • February 28 to March 5 - 24 Hours of Rare. 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 when 24 Hours of Rare will highlight the best of the global rare disease community, straight-up at noon, time zone by time zone. On March 1 and 2 there will be a series of panels, breakouts, workshops and networking sessions for patients and caregivers. More information and registration

    • March 1, 10:30 am to 5:30 pm EST - Virtual Rare Disease Day at the National Institutes of Health (NIH)More information and registration

    • March 2, 11 am to 1 pm EST - Penn Orphan Disease Center Rare Disease Day Webinar - Patients: The Heroes of Rare Disease ResearchMore information and registration

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