Chiari Support Organizations

Below are 12 leading organizations that provide education, support, advocacy, and research resources for children and families affected by Chiari malformation and related syringomyelia. These groups range from patient-led nonprofits to major pediatric medical centers and international support networks.

Top Organizations Supporting Chiari Malformation

American Syringomyelia & Chiari Alliance Project (ASAP)

The largest U.S. nonprofit dedicated to Chiari malformation and syringomyelia. Provides patient guides, annual conferences, local support groups, scholarships, and funds active research.
🔗 https://asap.org

Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF)

Funds research, education, and advocacy for Chiari and syringomyelia. Offers patient handbooks, webinars, community support, and a physician-finder tool.
🔗 https://bobbyjonescsf.org

Conquer Chiari (C&S Patient Education Foundation)

Delivers patient-friendly educational libraries, pediatric resources, school accommodation guides, personal stories, and community events.
🔗 https://conquerchiari.org

World Arnold Chiari Malformation Association (WACMA)

A global organization offering awareness, education, and community support for individuals and families affected by Arnold–Chiari malformations.
🔗 https://wacma.org

The Chiari Project

A community-driven nonprofit focused on pain education, youth outreach, the Chiari Kids initiative, creative programs, and regional peer support.
🔗 https://chiariproject.org

Chiari Clinic – Children’s Hospital of Philadelphia (CHOP)

A leading pediatric Chiari center providing clinical care, caregiver resources, and referrals to trusted Chiari advocacy organizations.
🔗 https://www.chop.edu/centers-programs/chop-chiari-clinic

Chiari Malformation Center – Johns Hopkins Medicine

Provides multidisciplinary pediatric and adult Chiari care, including expert surgery, telemedicine appointments, and integrated research.
🔗 https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/chiari-malformation-center

Chiari Malformation Resources – Stanford Children’s Health

Offers curated Chiari resources, links to major U.S. Chiari organizations, and support programs for families traveling for care.
🔗 https://www.stanfordchildrens.org/en/service/neurology/chiari-malformation/resources

Child Neurology Foundation – Chiari Malformations

Provides clinical overviews, research and trial information, and trusted links for families, caregivers, and healthcare providers.
🔗 https://www.childneurologyfoundation.org/disorder/chiari-malformations/

Seattle Children’s Hospital – Chiari Malformation Information

Delivers comprehensive pediatric-focused guidance on Chiari malformation, including diagnosis, surgical options, and postoperative care.
🔗 https://www.seattlechildrens.org/conditions/chiari-malformation/

The Chiari Institute (Great Neck, New York)

A medical center and research institute specializing in treatment of Chiari malformation and syringomyelia, with clinical and academic expertise.
🔗 https://thechiariinstitute.org

The Brain Charity (UK) – Chiari Malformation Support

UK-based nonprofit offering counseling, peer befriending, support groups, and educational resources for individuals living with Chiari malformations.
🔗 https://www.thebraincharity.org.uk/chiari-malformation

How to Use These Resources

For medical care: Johns Hopkins, CHOP, Seattle Children’s, Stanford, and The Chiari Institute provide clinical services and referrals
For support & community: ASAP, Bobby Jones CSF, Conquer Chiari, WACMA, and The Chiari Project offer peer groups, forums, conferences, and educational libraries
For research & advocacy: ASAP and Bobby Jones CSF fund research and promote patient education
For UK residents: The Brain Charity provides local counseling and support services