Rare Disease Day 2026: CURE SYNGAP1

Established by EURORDIS-Rare Diseases Europe in 2008, Rare Disease Day has grown into an international day of outspoken support for the rare disease community that’s rooted in advocacy, visibility, and hope for the future. With an ever-expanding platform featuring collaboration between national alliance patient organizations, parent and caregiver groups, medical professionals, educators, and service providers, the goal for this 19th Annual Rare Disease Day remains focused on amplifying the voices and experiences of over 300 million people living with a rare disease globally.

Held each year on February 28th – with the exception of leap year, when Rare Disease Day falls on the rarest of days, February 29th – organizers and participants find innovative and creative ways to highlight the urgency of funding critical and potentially life-saving research, the diverse needs of patients living with a rare disease and their families, the continued need for improved outcomes and accessibility across medical, academic, therapeutic and community settings, and highlighting the real stories and lives behind the statistics.

So what can SYNGAP1 families do to participate in this year’s Rare Disease Day? Just show up; in whatever way is authentic to you, to your loved one’s story, to your reality. No, you don’t have to celebrate; for some families, especially those new to the diagnosis or entrenched in the complicated and challenging symptoms and comorbidities common to SYNGAP1-Related Disorders, the idea of a celebration of any kind involving this rare disease may feel bizarre. But showing up and just sharing your truth, that’s something most of us are able to do, even if it’s just with one person. And the more we share, the less rare our stories become, until our children, their experiences, and their needs become part of everyday conversations in schools, medical settings, research labs, pharmaceutical drug companies, therapy clinics, and local, state, national and international communities. The world is no less theirs, so let’s make sure the world is a little less ignorant and do our part to facilitate tangible and meaningful change. 

Contact your local Representative in congress and your U.S. Senators and share the issues that matter most to you and family and the legislation you want to see passed to help improve the lives of your loved one living with SYNGAP1-Related Disorders. To truly represent you, they need to hear directly from their constituents navigating rare disease life on a daily basis. 

Check out our other fundraisers held throughout the year. Wear the official CURE SYNGAP1 (blue, purple, green, used to represent Autism, Epilepsy, and Intellectual Disability) or Rare Disease Day colors (pink, green, blue and purple, used to represent the over 7000 known rare diseases in the world) on February 28th. Zebra stripes are also used to convey the rarity of these diseases and are often incorporated into clothing and rare disease merchandise.