Craniosynostosis
Twelve trusted resources, from leading medical centers to parent-run support groups, covering diagnosis, treatment, recovery and long-term care.
Craniosynostosis is the early fusion of one or more of the sutures that let a baby’s skull grow. Cloverleaf Syndrome, the condition Alex was born with, is its rarest and most severe form. These sites offer expert information on diagnosis, surgical and non-surgical treatment, recovery and long-term care, along with community support, referral options and practical guidance for families.
Medical and educational resources
Children's Hospital of Philadelphia
Craniosynostosis overviewA comprehensive overview of craniosynostosis, including diagnosis and treatment options, supported by a multidisciplinary craniofacial program.
chop.eduBoston Children's Hospital
CraniosynostosisDetailed guidance on symptoms, causes, diagnosis and surgical interventions through its Cleft and Craniofacial Center.
www.childrenshospital.orgCincinnati Children's Hospital
Cranial Reconstruction CenterAn extensive health library covering craniosynostosis types, diagnostic workflows and treatment options, including endoscopic and open surgery.
www.cincinnatichildrens.orgStanford Children's Health
Craniosynostosis ProgramAdvanced diagnostics and minimally invasive surgical treatments led by pediatric neurosurgeons and craniofacial surgeons.
www.stanfordchildrens.orgJohns Hopkins Children's Center
Craniofacial and Craniosynostosis CenterA multidisciplinary team offering advanced imaging, cranial vault remodeling, strip craniectomy and family support services.
www.hopkinsmedicine.orgWeill Cornell Medicine
Craniosynostosis ProgramSpecialized pediatric neurosurgical expertise in cranial vault reconstruction and endoscopic techniques.
neurosurgery.weillcornell.org
Family and support organizations
Children's Craniofacial Association (CCA)
A long-standing nonprofit offering peer support, family education, events and advocacy for individuals with craniofacial differences.
ccakids.orgFACES: The National Craniofacial Association
Newsletters, care packages and online community services for individuals affected by craniosynostosis and craniofacial disorders.
faces-cranio.orgCAPPS: Craniosynostosis and Positional Plagiocephaly Support, Inc.
Parent-to-parent support, mailing lists, hospital support packages and educational resources for families.
cappskids.orgCranio Care Bears
Care packages for families whose child is facing craniosynostosis surgery, along with encouragement, stories and emotional support.
craniocarebears.orgChild Neurology Foundation
CraniosynostosisFamily-focused information, neurological context and shared stories related to craniosynostosis care and outcomes.
www.childneurologyfoundation.org
International and guideline resources
ERN-CRANIO
European Reference Network for Rare Craniofacial AnomaliesClinical guidelines, explanatory videos, patient-friendly care protocols and research related to syndromic craniosynostosis.
ern-cranio.eu
The Alexander Foundation has found these sites helpful. We list them as a starting point, not an endorsement, and we encourage every family to decide for themselves what is useful. Nothing here is medical advice.
Two ways to take the next step
You are not alone in this.
If your child has Cloverleaf Syndrome or another craniofacial condition and the bills are piling up, tell us what is happening. We help where we can, and we will point you to people who can help with the rest.
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