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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 the I Support Rare Disease badge or profile image below to use on your social pages.
  • Social Media Profile Frames are available for you to use at
  • Share Your Story and join the individuals and families who have contributed their personal accounts of living with rare diseases. Alone we are rare. Together we are strong!
  • 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.
  • Visit for additional awareness materials and downloads.


Supporting one another. Supporting our community.