Rare Disease Day 2021: Pushing for FTD Awareness


February 28 marks Rare Disease Day, an annual campaign intended to increase awareness of rare diseases and their impact on individuals and families.

While FTD is classified as a rare disease, far too many know that it isn’t rare enough. FTD is the most common form of dementia for people under 60. By formal estimates, FTD affects more than 60,000 people in the U.S. alone – but its impact is likely undercounted, due to frequent misdiagnosis, and limitations to healthcare access. Raising public awareness of FTD’s impact is crucial, to get families the help and support they need, build engagement in research and advocacy efforts, and ensure that health professionals and policymakers understand the devastating impact of this disease.

With each passing day, more FTD  stories are being told. From the first-ever World FTD Marathon held in October 2020, to a December 2020 Washington Post article highlighting the experiences of persons living with FTD, education and awareness are on the rise.

Making a gift to AFTD on Rare Disease Day, which coincides with the last day of our month-long With Love campaign, can bring closer a future free of FTD. For more information on our 10th annual With Love campaign, and how to support AFTD’s mission click here.

We also encourage you to follow the #NotRareEnough hashtag on social media, and tag your own FTD awareness posts in honor of Rare Disease Day.

Finally, as you look to raise awareness and share your story, be sure to make time to participate in AFTD’s March 5 Externally Led Patient-Focused Drug Development meeting with the FDA.  You can find out more about our virtual meeting, share pre-meeting comments, and RSVP via our EL-PFDD Meeting Page.

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