Support the groups doing the work
These nonprofits fund research, run patient registries and support families. Open Chiari doesn't take donations; every link below goes straight to the organization's own page.Open Chiari doesn't take donations. Every link goes to the organization's own page.
Bobby Jones Chiari & Syringomyelia Foundation
Maintains an international patient registry (new enrollment currently paused), hosts a yearly research colloquium, and funds Chiari research grants and fellowships.International patient registry (enrollment paused), a yearly research colloquium, and research grants and fellowships.
Conquer Chiari
Funds Chiari research, publishes patient education materials, and supported the Chiari1000 patient registry (now closed).Funds research and publishes patient education materials.
ASAP: American Syringomyelia & Chiari Alliance Project
Supports patients and families, publishes a newsletter, and has helped fund research into the genetics of Chiari.Patient and family support, a newsletter, and research funding.
Descriptions and links checked November 2026. [Before launch: confirm with each organization.]
Other ways to help
- Join a research study
Studies recruiting now, updated daily.
- Spread awareness in September
Free graphics and cards for Chiari Awareness Month.
- Share an Explain It link
Help one person understand Chiari today.
Open Chiari is not affiliated with these organizations and receives nothing from donations.