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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.
Learn about the potential late effects of pediatric cancer treatment, including their screening and management.
Cancer Hope Network provides free and confidential one-on-one emotional support to cancer patients, their caregivers, and their family members.
The Children's Hospital of Philadelphia has one of the best fertility preservation programs in pediatric oncology, offering choices for teenagers and young women as well as girls who have not yet experienced puberty.
The Resource Guide for Adolescent and Young Adult Survivors of Cancer offers important resources that may be helpful to adolescent and young adult (AYA) survivors of cancer.
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.
This guide addresses the way that the surgery, radiation, and chemotherapy used to cure childhood cancers can affect growing bodies and developing minds.
The Abramson Cancer Center of the University of Pennsylvania offers a comprehensive program for survivors who had cancer as children and are now adults.
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.