Rare Disease Day 2022

The RRPF is excited to be part of the international awareness-raising event for rare diseases. Rare Disease Day was launched in 2008 and has played an instrumental role in shining a light on rare disease and the need for more equitable access, treatment innovations, policy that protects the 300 million people across the globe, as well as greater access to care.


Some facts about rare disease:

  • 300 million people living with a rare disease worldwide
  • Over 6,000 different rare diseases
  • Less than 5% of rare diseases have a therapeutic treatment

How can you help the RRP community on Rare Disease Day 2022?

  • Tell your story and share on your social media. Use the hashtags: #RareDiseaseDay, #CureRRP, #WhileWeBreatheWeHope, #recurrentrespiratorypapillomatosis, as well as tag the RRPF @rrpforg and rare disease day @rarediseaseday (The RRPF will reshare all social media posts using @rrpforg and #RareDiseaseDay.)
  • Share the Rare Disease Day posts on @rrpf.org on your social media with the campaign tags above.
  • Become a hero to the RRP Community! Partner with the RRPF with your time, your resources, your knowledge.
  • Join us by becoming an automatic monthly contributor! No monthly gift is too small. Click Donate! (Goal is 28 new monthly donors.)
  • Help us reach our Rare Disease Day 2022 goal of raising $2,800 for RRP research and advocacy. Why $2,800? Rare Disease Day is always on the last day of February each year, and this year it falls on February 28!

Thank you in advance for all that you do to help drive research forward, create more awareness, as well as all that you do to share your RRP journey with the world.

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Breaking News!!!

RRPF President, Kim McClellan to speak at the White House Rare Disease Forum

Tonight! February 28th @ 5:30PM EST