Below are organizations that may be helpful to you. There is lots to learn, many ways to get involved, conferences to attend, fun events, ways to create awareness, advocacy opportunities, and people to know that will change your life and support you through your journey.

• Children’s Craniofacial Association (CCA Kids)
• Hydrocephalus Association
• Pediatric Hydrocephalus Foundation
• Faces: The National Craniofacial Association (FACES)
• Cranio Angel Network
• National Institute of Health (NIH)
• National Center for Advancing Translational Sciences (NCATS)
• National Organization for Rare Disorders (NORD)
• EveryLife Foundation
• Rare Disease Legislative Advocates (RDLA)
• Southwest Airlines
• Kaufman Children’s Center
• About Face
• Global Genes
• Genetic and Rare Diseases Information Center, GARD
• CoRDS Registry
• CAPPSKids
• Some1 Like You