group Support Groups, Specialists & Research Centers
A regional directory of mitochondrial disease support organizations, care pathways, and research centers for m.3243A>G, MELAS, and MIDD.
Finding support
When you are trying to find help, too much detail can be overwhelming. This page keeps the directory simple: support organizations first, then research and specialist centers below.
Support sites by region
These are often the best first stop for families looking for community, education, practical guidance, and help finding care.
Global
Broad international organizations and directories that can help you find community, education, and registry information.
International Mito-Patients (IMP)
International patient network connecting families, advocates, and country-level mitochondrial organizations.
Visit website → Global directoryBioblast MitoGlobal Societies
A broad mitochondrial knowledge hub that also helps people discover mito societies and related organizations.
Visit website →North America
Patient-led and family-focused organizations across the United States and Canada.
MitoAction
Practical education, peer support, advocacy, and patient programs for people living with mitochondrial disease.
Visit website → United StatesUnited Mitochondrial Disease Foundation (UMDF)
A major nonprofit supporting research, education, family programs, and specialist care connections.
Visit website → CanadaMitoCanada
Canadian charity focused on awareness, family support, and research funding for mitochondrial disease.
Visit website → United StatesMuscular Dystrophy Association (MDA)
Broader neuromuscular organization that can still be useful for mitochondrial families seeking care-center and community pathways.
Visit website →Europe and UK
Support organizations and public-facing services across the UK and Europe.
The Lily Foundation
UK charity funding research while also supporting affected families with information and community resources.
Visit website → United KingdomThe Charlie Gard Foundation
UK charity listing for a family-centered foundation supporting awareness, research, and quality-of-life support in mitochondrial disease.
Visit website → Italy / EuropeMITOCON
Italian patient association and European advocacy organization with patient-facing information and registry links.
Visit website → United KingdomRare Mitochondrial Disorders Service
NHS service with public-facing guidance on specialist care pathways for rare mitochondrial disorders.
Visit website →Oceania
Australia-wide support and navigation resources for patients and families.
Australian Mitochondrial Disease Foundation (AMDF)
Australian charity focused on family support, community building, and funding research.
Visit website → AustraliaMito Foundation
National Australian organization offering support, education, advocacy, and practical navigation help.
Visit website →Online communities
Connect with other patients and families online to share experiences, ask questions, and find support from people who get it.
- UMDF Community Forums - connect with other patients and families through the UMDF's online community.
- MitoAction Community - peer support, webinars, and virtual meetups for people affected by mitochondrial disease.
- Facebook: MELAS Syndrome Group - International private group for people and families affected by MELAS and related mitochondrial mutations.
- Facebook Groups - search Facebook for "MELAS", "mitochondrial disease", or "m.3243A>G" to find active support groups. Several private groups are very welcoming to new members.
- Reddit r/mitochondrialdisease - growing community for questions, experiences, and research updates.
- Reddit r/mito - a broader mitochondrial disease subreddit: news, research, and discussion from around the world.
Finding specialist care
If you are trying to find the right clinic, start with a public directory or national service first. That is usually faster and more reliable than chasing named contacts one by one.
UMDF Clinic Network
Find UMDF-recognized mitochondrial disease centers through the official clinic-network directory.
Open clinic network → United States / CanadaNAMDC Specialist Finder
Locate NAMDC-affiliated clinicians, centers, and research sites using the public consortium directory.
Open NAMDC finder → EuropeOrphanet
Use the European rare-disease portal to identify expert centers and referral pathways.
Open Orphanet → Italy / EuropeMITOCON
Patient-facing Italian organization with links that can help families navigate specialist and registry pathways.
Open MITOCON → United KingdomRare Mitochondrial Disorders Service
Public NHS service information for rare mitochondrial disorders, including care pathways and service context.
Open NHS service page → AustraliaMito Foundation
A useful first stop for Australian patients and families trying to work out support and specialist care options.
Open Mito Foundation →Ask your clinician which mitochondrial, metabolic, genetics or paediatric service best matches your needs. Referral routes differ by location. Specialist referral should reflect age, phenotype and local service pathways. 3
Research centers by region
These centers help shape mitochondrial care through specialist clinics, registries, translational research, and clinical studies. Listing a center here does not guarantee referral access, but it gives you a reliable public homepage to start from.
North America
Established consortium sites and mitochondrial clinics across the United States and Canada.
Columbia University Medical Center
NAMDC administrative leadership, MCN participation, and biorepository work.
Visit institution → Philadelphia, PA, USAChildren's Hospital of Philadelphia (CHOP)
Pediatric neurogenetics, NAMDC participation, and multidisciplinary mitochondrial care.
Visit institution → Boston, MA, USAMassachusetts General Hospital
Adult and pediatric mitochondrial evaluation with strong genetics integration.
Visit institution → Seattle, WA, USASeattle Children's Hospital
Pediatric mitochondrial care with involvement in specialized clinical studies.
Visit institution → Rochester, MN, USAMayo Clinic
Specialist mitochondrial evaluation, registry work, and biobank-linked clinical care.
Visit institution → Houston, TX, USABaylor College of Medicine / Texas Children's
Pediatric metabolic and mitochondrial care within NAMDC and MCN networks.
Visit institution → Aurora, CO, USAUniversity of Colorado / Children's Hospital Colorado
Clinical registries, phenotypic mapping, and pediatric mitochondrial medicine.
Visit institution → Cleveland, OH, USACleveland Clinic / University Hospitals
Neurological and multisystem mitochondrial disease care with research network involvement.
Visit institution → San Diego, CA, USAUniversity of California, San Diego (UCSD)
Metabolic and neurosciences-focused mitochondrial assessment and follow-up.
Visit institution → Stanford, CA, USAStanford University / Lucile Packard
Pediatric genetic and metabolic disorders with specialist mitochondrial expertise.
Visit institution → Baltimore, MD, USAJohns Hopkins University / Kennedy Krieger
Comprehensive metabolic and neurological screening for mitochondrial disease.
Visit institution → Washington, DC, USAChildren's National Medical Center / GWU
Pediatric mitochondrial care with clinical trial and subspecialty coordination.
Visit institution → Hamilton, ON, CanadaMcMaster University Medical Centre
Canadian mitochondrial referral site with NAMDC connections and registry involvement.
Visit institution →Europe
Cross-border reference networks and established specialist programs across Europe and the UK.
EURO-NMD Coordination Center
Pan-European coordination and harmonization for rare neuromuscular and mitochondrial disorders.
Visit institution → Pisa, ItalyUniversity of Pisa (Ospedale Santa Chiara)
Translational neurobiology and specialist mitochondrial clinical research.
Visit institution → Munich, GermanyFriedrich-Baur-Institute, LMU Munich
mitoNET leadership, neuromuscular diagnostics, and muscle biopsy expertise.
Visit institution → Paris, FranceNecker-Enfants Malades Hospital (CARAMMEL)
Rare disease referral care with strong genomics and pediatric expertise.
Visit institution → Newcastle, UKNewcastle University
Major mitochondrial DNA research center with deep experience in patient cohorts and translational studies.
Visit institution → Nijmegen, NetherlandsRadboud University Medical Center
Integrated metabolic and pathway-focused mitochondrial disease research.
Visit institution → Leuven, BelgiumCentrum Metabole Ziekten (UZ Leuven)
Multidisciplinary metabolic center for children and adults, coordinating neurology, cardiology, and clinical genetics.
Visit institution →Asia
Large academic centers and regional networks advancing cohort studies, multi-omics, and therapeutic research.
Tohoku University (MitoMoonshot)
MELAS-related clinical trials and translational research programs.
Visit institution → Yokohama, JapanRIKEN Center for Integrative Medical Sciences
Multi-omics and metabolic network research relevant to mitochondrial disease pathways.
Visit institution → Osaka, JapanOsaka University
Mitochondrial dynamics and basic science research with translational relevance.
Visit institution → Beijing, ChinaPeking University First Hospital
Nationwide epidemiology and clinical study of MELAS and related disorders.
Visit institution → Shanghai, ChinaHuashan Hospital Fudan University
Multicenter clinical genetics and rare disease management.
Visit institution → Jinan, ChinaQilu Hospital of Shandong University
Neuromuscular and neurodegenerative research relevant to mitochondrial disorders.
Visit institution → Seoul, South KoreaSeoul National University Hospital (SNUH)
Rare disease center with comprehensive mitochondrial disease management.
Visit institution → Multiple sites, IndiaICMR Infrastructure Network (IRISE)
Regional diagnostic infrastructure and collaborative metabolic research sharing.
Visit institution →Oceania
Australian centers combining specialist clinics, statewide services, and telehealth-oriented care.
Neuroscience Research Australia (NeuRA)
Adult neurogenetics care with national telehealth reach.
Visit institution → Westmead, NSW, AustraliaChildren's Hospital at Westmead
Pediatric metabolic and mitochondrial disorders service for NSW and ACT families.
Visit institution → Randwick, NSW, AustraliaSydney Children's Hospital
Pediatric clinic with mitochondrial expertise for children and adolescents.
Visit institution → South Brisbane, QLD, AustraliaQueensland Children's Hospital
Lifespan metabolic medicine and pediatric mitochondrial care.
Visit institution → Nedlands, WA, AustraliaPerth Children's Hospital
Pediatric metabolic medicine services within Western Australia.
Visit institution → Perth, WA, AustraliaThe Neurogenetics Clinic / Royal Perth
Adult neurogenetics and mitochondrial assessment for the WA catchment area.
Visit institution →South America
Regional organizations and research institutions helping expand diagnostics and clinical expertise.
SLEIMPN
Regional society supporting metabolic disease diagnostics, standards, and collaboration.
Visit institution → Campinas, SP, BrazilLNBio (CNPEM)
Structural biology and biosciences research relevant to mitochondrial medicine.
Visit institution → Rio de Janeiro, RJ, BrazilOswaldo Cruz Institute (Fiocruz)
Public health and laboratory research with relevance to metabolic diagnostics.
Visit institution → Buenos Aires, ArgentinaFleni Hospital
Specialized neurology and neurogenetics with international patient-facing services.
Visit institution →Africa and Middle East
Centers contributing founder-mutation research, diagnostics, and clinical genetics expertise.
University of Cape Town (GSH/NHLS)
Inherited metabolic disease screening and founder-mutation research.
Visit institution → Potchefstroom, South AfricaNorth-West University (NWU)
Bioenergetics, metabolomics, and mitochondrial diagnostics research.
Visit institution → Jerusalem, IsraelHadassah Medical Center (Ein Kerem)
Advanced hospital-based care and translational clinical work in neurometabolic disease.
Visit institution → Beersheba, IsraelBen-Gurion University
Mitochondrial genomics, evolution, and genetic mapping.
Visit institution → Rehovot, IsraelWeizmann Institute of Science
Mitochondrial dynamics, immunology, and regenerative biology.
Visit institution →References
3 sources
Sources for the information on this page.
- (2018). Phenotypic heterogeneity in m.3243A>G mitochondrial disease: The role of nuclear factors. Annals of clinical and translational neurology. Research articleDOIFull text↑ Back to text
- (2018). mtDNA heteroplasmy level and copy number indicate disease burden in m.3243A>G mitochondrial disease. EMBO molecular medicine. Research articleDOIFull text↑ Back to text
- (2022). Patient care standards for primary mitochondrial disease in Australia: an Australian adaptation of the Mitochondrial Medicine Society recommendations. Internal medicine journal. Clinical guidanceDOIFull text↑ Back to text
Browse the research library for papers grouped by topic.