Mitochondrial Disease Community Registry (MDCR)
The "privacy assured" registry helps collect information that will assist in diagnosing and treating mitochondrial disease.
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Showing 1 - 10 of 32 results
Mito101 Education
This tool provides information to help families and practitioners learn more about mitochondrial disease.
Angel Flights
This nonprofit supports families to fly for treatment options not close to their home.
Ronald McDonald House Charities
This charity helps to support families with lodging while seeking care in the Philadelphia area. They have locations in Philadelphia, PA as well as Camden, NJ that offer transportation to CHOP.
Leigh Syndrome Registry
If you or a family member has been diagnosed anywhere in the world with Leigh Syndrome, please enroll in the patient registry to make an important contribution to Leigh Syndrome research.
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.
Precision Mitochondrial Medicine
Watch a video where Marni Falk, MD, explains the requirements in precision mitochondrial medicine for addressing health system challenges in big data integration and mining, pre-clinical therapeutic modeling, innovative clinical trial design and team-based clinical care delivery.
Mitochondrial Disease Genes Compendium, 1st edition
Dr. Marni Falk and a team of international experts have created a resource to provide an all-in-one, readily accessible, and easy-to-use at point of care reference on mitochondrial disease from a gene-based perspective. In this book, clinicians and researchers will find a complete overview of mitochondrial disease genes relevant across all specialties, cataloging and building context around clinical features and the genetic basis of each condition.
The Center for Parent Information and Resources (CPIR)
Provides resources for young people with a disability considering employment, and helps families find a Parent Training and Information Center (PTI) or a Community Parent Resource Center (CPRC) in their area that offer information about early intervention, school services, therapy, local policies, transportation, and much more.