Countdown to Rare Disease Day 2025

Every February, we come together for Rare Disease Month to amplify voices, share stories, and drive change in the rare disease community. Over 300 million people worldwide are living with a rare disease, including individuals diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. 

Tomorrow, February 28, 2025, we recognize Rare Disease Day, a day when people across the globe unite in raising awareness, advocating for better care, and showing support for those impacted by rare diseases. From landmarks lighting up in rare disease colors to personal stories shared online, this day reminds us that no one is alone in this journey—our community is worldwide. 

Last year, we emphasized the “Power of Community” as we celebrated SRNA’s 30th anniversary.  We highlighted six individual stories and the ways that being a part of the SRNA community has impacted their journeys. This year, we invite you to take action and contribute to the strength of our community. Engage in the power of community even further by attending a community meetup or joining a support group meeting, deepening your understanding of rare neuroimmune disorders through our online learning program, and connecting with old and new friends on our new Discord channel.  

This new channel offers you another space to connect, receive support, and stay connected to our work and the work of the rare disease community – online and available at any time. With disorder-specific chats, chats for loved ones, and more, you can carry the support of the rare neuroimmune disorders community wherever you go.  

Who is Discord for? 

If you are a person diagnosed with a rare neuroimmune disorder (ADEM, AFM, MOGAD, NMOSD, ON, or TM), a family member of someone diagnosed, or an advocate for these disorders, this is a space for you! The Discord is open to people who are members of SRNA. If you aren’t already a member and would like to join, membership is completely free and takes just a few minutes at wearesrna.org/join.  

 Once in Discord, here’s how to get started:  

1. Review our rules and guidelines–the most important thing about this group is making sure everyone feels happy and safe, and that this space is welcoming to all our community members, and these rules help ensure that this remains the case. 
2. Open a ticket and let us know your name, email, and whether you’re a member of SRNA. We will then greenlight you and give you access to the server!  
3. Once approved, view the roles channel and react to role comments with the corresponding emoji that applies to your experience with rare neuroimmune disease. This isn’t only cosmetic! It allows you to access disorder, age, and patient/loved one-specific channel! 
4. Feel free to introduce yourself in the introductions channel! The best way to easily connect is to share your experiences and interests there, then text in general chat and your person-specific chats. 
5. If you have questions or need additional support, you can reach out to Landy via email at [email protected].  

Community Wide Petition 

The EveryLife Foundation for Rare Diseases is launching a community petition and they would love your support signing and disseminating it far and wide. The petition can be signed by all adult members of our community: individuals with rare diseases, parents and caregivers, multiple household members, neighbors, teachers, researchers, clinical team members, friends, book club members, team members, church communities,  Republicans, Democrats, Independents, you name it.

The petition is open now – and will close at the end of the day on Thursday, February 27.  EveryLife will send it to all members of Congress on Friday, February 28th – Rare Disease Day 2025. You can sign the petition here.

Rare Disease Day is not just a moment but a movement. Now and always, we are Stronger Together, and we will continue to fight for you and all those in our community.