Showing 1 - 10 of 37 results
We know how hard it is to care for a child with complex medical needs. We are here to support you and ease these difficulties any way we can. This guide was created as a resource for you and your family to navigate your care and partnership with our team at the Leukodystrophy Center.
Provides a brief overview of the importance of risk and protective factors as they relate to suicide and offers guidance about how communities can best use them to decrease suicide risk.
Babies born with congenital diaphragmatic hernia (CDH) may go on ECMO if they aren’t responding well to other efforts to stabilize them. Find answers to common questions parents have about this potential treatment.
More information about congenital diaphragmatic hernia (CDH) to help make choices about your child’s care and choose a CDH treatment center that is right for you.
These webinar videos from the Leukodystrophy Symposium provide up to date information on the best diagnostic and disease management practices, with an emphasis on how to provide patient and disease centered care during the COVID-19 health emergency.
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
Omphalocele Awareness/Mothers of Omphaloceles (MOOS) is an Internet support group for families of children with omphaloceles.
AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.
With its mission to improve health outcomes for patients with X-linked adrenoleukodystrophy, ALD Connect provides education and support information for families, research information, ways to get involved, and more.
Canavan Foundation is a not-for-profit organization dedicated to educating at-risk populations about Canavan disease and other Jewish genetic diseases and supporting research looking into a cure.