Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s 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.
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
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