Eat. Sleep.
Advocate. Repeat.
Rare Disease Day
Feb. 28, 2026
Rare Disease Day 2026 is coming up February 28! This special day is dedicated to recognizing the world’s 10,000+ rare diseases, including GM1 gangliosidosis. Rare Disease Day offers us the chance to connect with others living with a rare disease and to know that a full community of supporters is available to us. Read below for ways to get involved in this year’s Rare Disease Day activities.
12 Ways to Get Involved with Rare Disease Day 2026
Buy our merch, then take a selfie and tag us on social media at #curegm1. Group photos with featuring Rare Disease Day merch are even better! You can also wear zebra stripes on Rare Disease Day to show support!
Send us quotes, stories, and photos of your family that we can use in social media posts and awareness campaigns. You can email them to us at jess@curegm1.org.
Contact your local news station, magazine, or newspaper to be featured in a story. This is an excellent time for GM1 families to get in the news! Media outlets love special interest stories, and press makes more people aware of our cause.
CHECK BACK FOR OUR SAMPLE PRESS RELEASE COMING SOON!
It could be a community run, a dinner party or a simple money-raising campaign. Cure GM1 will build a page for you, making the process as easy as possible. Contact us at jess@curegm1.org to get started. You can also download our fundraising manual.
Write a blog post or article that we can post on our site. Ideas for topics include: your journey to diagnosis, what you wish the public knew about GM1, and what it’s like caring for someone with the disease. See examples here. Email us at info@curegm1.org to get started!
Raise your voice to your U.S. senators and representatives during Every Life Foundation’s Rare Disease Week event Feb. 24 to Feb. 26 on Capitol Hill. Let your representatives know about GM1 gangliosidosis and that those living with rare diseases need their support.
Walk or run with Charity Miles. Download the app and choose Cure GM1 as your charity of choice. Be sure to ask friends and family to donate to your campaign.
Calling all photographers! Our Rare Disease Day Photo contest helps portray what it’s like to live with GM1. Raw and poignant moments humanize this disease and will help others understand what it is like to live with GM1 day to day. The winner will be featured on our Facebook and Instagram pages on Rare Disease Day, and in our March Newsletter.
Add a GM1 Awareness Photo Frame to your Facebook profile picture to spread awareness about GM1 and Rare Disease Day. It’s so simple.
Download our coloring pages and give them to teachers and schools. Speak about Rare Disease Day in a classroom.
Commit to becoming a monthly Cure GM1 donor and share your choice with friends and family on social media in honor of Rare Disease Day.
Will you commit to doing one or more of these things to help spread awareness about our cause in February? Let us know your plans so we can help promote your campaign. Thank you!