Rare Disease Day was created to recognize the world’s 10,000+ rare diseases, including GM1 Gangliosidosis. Every February, we conduct a campaign to spread awareness about GM1 and Rare Disease Day, and we could use the help of GM1 Families!
Here are 11 tips on how you can participate:
1. Buy our Rare Disease Day merch, then take photos wearing and using it on Social media, using the hashtag #curegm1. Even better if you have a group photo of people using and wearing it! You can also wear stripes on Rare Disease Day to show support!
2. 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 info@curegm1.org.
3. Contact your local news station, magazine, or newspaper to be featured in a story. This is an excellent time for GM1 families get in the news. Media outlets love special interest stories, and press makes more people aware of our cause.
4. Host a fundraiser. It could be super easy! We’re happy to brainstorm ideas with you. Facebook fundraising is particularly easy. Contact us at info@curegm1.org if this sounds like something you’d like to do. You can also download our fundraising manual.
6. 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!
7. Advocate. Raise your voice to your U.S. representatives during Every Life Foundation’s Rare Disease Week event, between February 24th – 28th 2025, and let them know about GM1 gangliosidosis. View the agenda and register here.
8. 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.
9. Enter our Rare Disease Day Photo contest. Calling all photographers to portray what it’s like to live with GM1. Raw and poignant moments humanize this disease and will help others understand how it is to live with it day to day. The winner will be featured on our Facebook and Instagram on Rare Disease Day, and in our March Newsletter.
10. Add a GM1 Awareness Photo Frame to your facebook profile picture to spread awareness about GM1 and Rare Disease Day. It’s so simple.
11. Download our coloring pages and give them to teachers and schools. Speak about Rare Disease Day in a classroom. Here are two designs to download.
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!