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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.
The American Cancer Society website offers helpful information about childhood cancer diagnosis, treatment, prognosis and resources.
NFFA is a parent volunteer group that exists to support families and individuals at CHOP who are affected by neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) or schwannomatosis.
In this webinar CHOP experts discuss neuropsychological evaluation, the legal rights of students, and how to support your child as he returns to learning.
Follow these rules to promote use of a healthy speaking voice, and improve or prevent a voice disorder.
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 NF2 Crew is an online support community for patients and family members (and other loved ones) with neurofibromatosis type 2.
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.