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Rare Disease Day

About Rare Disease Day

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. It promotes raising awareness and generating change for the 300 million people worldwide living with a rare disease such as Niemann-Pick, their families and carers. YOU can show your support on Rare Disease Day by raising awareness of Niemann-Pick disease and what it means to be rare.

Anyone can get involved in Rare Disease Day awareness. Participants can find helpful resources, activities and events to get involved at This global event held annually on the last day of February, was founded by EURORDIS and is sponsored by the National Organization for Rare Diseases (NORD).

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge among the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

NNPDF Rare Disease Day Participation

Participation is easy!

  • Download and use the I Support Rare Disease badge as your profile on your social pages. (Please Note: Customized profile frames are no longer offered by Facebook.)
  • Share your NNPDF community members’ “rare” stories and videos from NNPDF’s (public) social pages. Find us on Facebook, Instagram and Twitter.
  • Share the global Rare Disease Day infographics from NNPDF’s social pages.
  • Register to attend virtual Rare Disease Week on Capitol Hill.
  • Participate in the Scavenger Hunt during virtual Rare Disease Week on Capitol Hill for a chance to win a grant for National Niemann-Pick Disease Foundation which will provide continued awareness and support for the Niemann-Pick community.
  • Share Your Story for a chance to win a donation to NNPDF. Your rare disease stories are pathways to treatments and cures! 

Supporting one another. Supporting our community.