People know that HSP is a rare disease. Rare Disease Day is celebrated on the last day in February each year, lauched by EURORDIS in 2008. The day aims to raise awareness of rare diseases, and offers a chance for the 300 million people (worldwide) with a rare disease to join together. There are a few HSP related things on Rare Disease Day this year, and you may like to participate:
SP Foundation Event
The USA HSP group, the Spastic Paraplegia Foundation (or SP Foundation for short) are hosting a special SPF Talks event. This is a meaningful opportunity for our entire community — patients, caregivers, families, researchers, and advocates — to come together across countries, just as we did for World HSP/PLS Day. That day showed how powerful it is when we gather as one voice. Rare Disease Day gives us another chance to strengthen those connections and stand together.
The main session will be held in English. However, participants may:
Remain in the main group discussion, or
Join a Zoom breakout room designated for their national association, where conversations can continue in their own language.
They warmly encourage us to share the registration link with you and invite you to take part, with details here: https://sp-foundation.org/get-involved/spf-talks/february-28-2026.html
Stream of HSP Broadway Show
Anne Gridley’s critically acclaimed play Watch Me Walk has finished its Off-Broadway run, but it’s now returning for one week to stream on demand. The show, about Gridley’s rare disease called hereditary spastic paraplegia which is causing her to lose her ability to walk, will stream February 28–March 7. Tickets to view the stream are available for $25 at SohoRep.org, in partnership with the Spastic Paraplegia Foundation, Inc.
The stream will coincide with Rare Disease Day February 28. Said Gridley in a statement, “I am extremely grateful to Soho Rep and the Spastic Paraplegia Foundation to be able to offer a streaming version of Watch Me Walk. To do so on Rare Disease Day is even more meaningful. Bringing awareness to HSP is part of why I created the show, and to share it with a global audience after a fantastic run in New York is an honor.”
You can see a clip on Instagram: https://www.instagram.com/reels/DVG_SZODytW/
The words above, I ‘borrowed’ from here: https://playbill.com/article/anne-gridleys-watch-me-walk-about-rare-disease-to-stream-on-demand
More about Rare Disease Day
You can read more about Rare Disease Day on their website: https://www.rarediseaseday.org/
In the UK one main focus comes from Genetic Alliance: https://geneticalliance.org.uk/campaigns-and-research/rare-disease-day/
If you wish to make a statement about rare disease day, you could light up for rare: https://www.rarediseaseday.org/toolkits/lightupforrare/ – use pink, blue and/or green lights at 7pm wherever you are.