This year, Rare Disease Day occurs on February 29—the rarest day of all!
Spinal muscular atrophy (SMA) affects 12,000 people in the U.S. Yet, the SMA community is part of a greater community—the rare disease community—that comprises of 300 million people worldwide. Together, we create an even stronger voice to raise awareness and educate others about SMA and other rare diseases that seldom get noticed.
Throughout the month of February, there will be many ways for you to get involved and celebrate Rare Disease Day and our community with Cure SMA!
Participate in the Community Album
We are looking for photos from individuals, families, and friends in the SMA Community in honor of Rare Disease Day. Share your photos and we’ll add them to our #RareDiseaseDay Community Album! Post photos in the comment section on Facebook or email us at [email protected].
Tell us, “What does it mean to be rare?”
The SMA community is part of a wider rare disease community. Let us know what it means to you to have a rare disease or be affected by a rare disease, and how the SMA and rare disease community support you? Send your perspective to [email protected].
Support Facebook fundraiser
This is an easy way to raise funds, spread awareness, and encourage your friends to get involved. Starting on February 14, go on Facebook and share Cure SMA’s Facebook fundraiser with your own online community.
Read or participate in a community spotlight story
Stay tuned for Community Spotlight stories featuring teens and adults who live with SMA. Are you interested in sharing your story? Email [email protected] to find out how to participate!
Ask your Members of Congress to prioritize funding for newborn screening
Congress is preparing its budget for the next fiscal year (2021). Given the importance of early diagnosis and treatment for SMA, we need your help to ensure newborn screening programs are fully funded. Take action by sending an email urging your Members of Congress to prioritize this funding.
About Rare Disease Day
Rare Disease Day is the official international day to raise awareness for rare diseases. Rare Disease Day was launched by EURODIS in 2008. Organizations from across the globe, including Cure SMA, recognize this day as an opportunity to raise awareness of and support for people living with a rare disease.