The Yaya Foundation for 4H Leukodystrophy
The Yaya Foundation focuses on finding a cure for 4H leukodystrophy by supporting research, raising awareness, improving education and connecting families.
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Diagnosis and Management of Mitochondrial Disorders
"Written by the world’s foremost mitochondrial researchers, the book comprehensively presents the state-of-the-art in mitochondrial medicine, making it of interest to a wide variety of specialists, including neurologists, geneticists, internists and biologists."
MSeqDR: the Mitochondrial Disease Sequence Data Resource Consortium
The Mitochondrial Medicine team at CHOP provides this global resource to facilitate genomic and phenotype knowledge and data sharing and analysis across the global mitochondrial disease community.
Cure MLD
Offers support to families recently diagnosed with or living with metachromatic leukodystrophy (MLD). The website links to relevant clinical and research opportunities available at CHOP.
Acne Express: On-demand Dermatology Care
Acne Express is a virtual consult service that uses secure photograph submissions to assess your child’s acne. This service is available to patients 8 to 17 years old in New Jersey and Pennsylvania who have a MyCHOP account. Within 5 business days, a CHOP Dermatology physician assistant will review your case and included photos, make treatment recommendations, and prescribed medications if needed.
Preparing for Surgery: Surgery Prep Books for Kids
If your child is scheduled to have surgery at Children's Hospital of Philadelphia or one of our surgery centers, these surgery prep books can help prepare them for what to expect.
Desensitization Technique Videos for AMPS
Check out our video library of desensitization techniques for Amplified Musculoskeletal Pain Syndrome.
Global Leukodystrophy Initiative Consortium (GLIA)
Children’s Hospital of Philadelphia (CHOP) is leading an initiative to establish a multi-institutional program to advance research and treatment across the leukodystrophies.
Transplant Process at CHOP
Information on the transplant process at CHOP.
Be the Match Peer Connect Program
The Peer mentors are trained volunteers who have either undergone transplant or are caregivers for someone who has undergone transplant. In order to be matched, you fill out the online form that you can get to from the link above and answer questions about what you are looking for in a peer connection, your child’s diagnosis, where you are in the transplant process.