Visit the websites of IMP Member Organisations
Other patient information sites
- www.MiopatiaMitocondrial.com.br - Brazilian organisation for mitochondrial patients
- www.LHON.org - patient information site on Leber's Hereditary Optic Neuropathy
- www.cmdn.org.uk - the children's mitochondrial disease network, United Kingdom
- www.rareconnect.org - The Eurordis website with a special forum on Leigh's disease
Facebook groups for patients in English
- IMP: international closed community group
- IMP: international closed community group for LHON patients/carers/families
- The Lily Foundation support group for families (for UK based patients)
- The Lily Foundation support group for adults (for UK based patients)
- MitoAction
- MitoCanada
- Mito Foundation
- UMDF: United Mitochondrial Disease Foundation
- Lebers Hereditary Optic Neuropathy (LHON)
- Leigh network
- MELAS Syndrome International Support Group
- MELAS support
- MELAS Rare Disease
- Kearns Sayre Syndrome & Chronic Progressive External Ophthalmoplegia
- CPEA/KSS
- MERFF
- PDCD Caregivers
- PDCD Parents and Friends
- Megdel
- Charlie Gard Foundation
- Mito Matters UK
- Mitochondrial Disease Awareness and Education
- Mito Friends (Teens and young adults)
- Mito Families!
- Mitochondrial & Metabolic Disease Nutrition Discussion
- Mito Adult Support
- Mito Café: Support for Adults with Mitochondrial Disease
Facebook groups for patients in Bulgarian
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Facebook groups for patients in Dutch
Facebook groups for patients in French
Facebook groups for patients in Italian
- Amici di Mitocon Bambini - patologie mitocondriali pediatriche
- Amici di Mitocon Adulti - Patologie mitocondriali degli adulti
- Amici di Mitocon Neuropatia Ottica di Leber (LHON) e ADOA
Facebook groups for patients in Portuguese
Facebook groups for patients in Spanish
European organisations
- www.eurordis.org - European organization for rare disease patients
- RareConnect on line community mitochondrial diseases (12 languages)
- www.rarediseaseday.org - Rare Disease Day, annual event
- www.enmc.org - European Neuro Muscular Centre
- www.ema.europa.eu/ema/ - European Medicines Agency
- www.ec.europa.eu - European Commission on research and innovation into rare diseases
Pharmaceutical companies involved in mitochondrial disease research
- Khondrion, The Netherlands
- Mitobridge, USA
- Minovia, Israel
- Modis Therapeutics, USA
- NeuroVive Pharmaceutical, Sweden
- PTC Therapeuticals, USA
- Reata Pharmaceuticals, USA
- Reneo Pharmaceticals, USA
- Santhera, Switzerland
- Stealth Biotherapeutics, USA
- Take On TK2 - website for patients and health care professionals by Modis Therapeutics
Other online resources