Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
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My newborn daughter has been diagnosed with a meningoencephalocele in the back of her head. Can she survive with this condition? How long can she survive? See answer
What causes an infant to be born with this condition? My 9 month old baby boy had surgery to repair this after months of us being told he had allergies, although it was clear he had an obstruction in his nasal cavity and he was not able to breath well since birth. Also, is this a hereditary condition? How many infants are diagnosed with this? What are the long term affects even after repair? See answer