Member organizations of IMP
- www.aepmi.org - association of mitochondrial disease patients, Spain
- www.amdf.org.au - australian mitochondrial disease foundation, Australia
- www.association-ammi.org - association for mitochondrial disease patients, France
- www.boks.be/site - association for children and adults suffering from metabolic disease, Belgium
- www.dgm.org - German organization for muscular diseases, Germany
- www.thelilyfoundation.org.uk - mitochondrial patient organization, United Kingdom
- www.musculardystrophyuk.org - organization for muscular diseases, United Kingdom
- www.mitoaction.org - mitochondrial disease patient organization, United States of America
- www.mitocanada.org - mitochondrial disease patient organization, Canada
- www.mitocon.it - mitochondrial patient organization, Italy
- www.umdf.org - united mitochondrial disease foundation, United States of America
- www.stofwisselingsziekten.nl - Dutch association for children and adults with metabolic disease, The Netherlands
- www.Spierziekten Nederland.nl - Dutch association for muscular diseases, The Netherlands
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.belangenverenigingloa.com - Dutch advocacy group LOA/LHON
- 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
- IMP: closed community group IMP: https://www.facebook.com/groups/581355625346442/ (english)
- AEPMI: AEPMI familias: https://www.facebook.com/groups/60750279276068/ (spanish)
- AMDF: Australian Mitochondrial Disease Foundation: https://www.facebook.com/groups/44299119727/ (English)
- BOKS: BOKS vzw: https://www.facebook.com/groups/292738690935752/ (dutch)
- The Lily Foundation: The Lily Family Mitochondrial Disease Support Group: https://www.facebook.com/groups/lilyfamilymitosupport/ (english)
- MitoAction: https://www.facebook.com/groups/22185295570/ (english)
- MitoCanada: https://www.facebook.com/MitoCanada (english)
- Mitocon: AMICI DI MITOCON: https://www.facebook.com/groups/120185648043280/ (italian)
- Mitocon: Insieme per lo studio e la cura delle malattie mitocondriali: https://www.facebook.com/groups/37493683308/ (italian)
- UMDF: United Mitochondrial Disease Foundation: https://www.facebook.com/groups/umdfgroup/
- Lebers Hereditary Optic Neuropathy (LHON): https://www.facebook.com/groups/219765024858400/ (english)
- LOA/LHON belangenbehartiging: https://www.facebook.com/groups/615379848498198/(dutch)
- Leigh network: https://www.facebook.com/groups/203975279619098/ (english)
- MELAS Syndrome International Support Group: https://m.facebook.com/groups/1543536872623139/(english)
- MELAS support: https://www.facebook.com/groups/MELASSUPPORT/ (english)
- MELAS Rare Disease: https://www.facebook.com/groups/16939010167/ (english)
- Kearns Sayre Syndrome & Chronic Progressive External Ophthalmoplegia: https://www.facebook.com/groups/ksscpeo/ (english)
- CPEA/KSS: https://facebook.com/groups/397788546984359/ (english)
- MERFF: https://www.facebook.com/groups/272992249423720/ (english)
- PDCD Caregivers: https://www.facebook.com/groups/866318513458303/(english)
- PDCD Parents and Friends: https://www.facebook.com/groups/pdcdkids/ (english)
- Megdel: https://m.facebook.com/Megdel3mga3-Methyl-Glutaconic-Aciduria-1886578088309739/ (english)
- Charlie Gard Foundation: https://www.facebook.com/groups/265101867249571/permalink/559036747856080/(english)
- Our lives with Nina and Darin and mitochondrial Leigh disease story: https://www.facebook.com/groups/143162239153587/ (english)
- Mito Matters UK: https://www.facebook.com/groups/mitomattersuk/ (english)
- Mito Info: https://www.facebook.com/groups/mitoinfo/ (dutch)
- Ouders van kinderen met een energiestofwisselingsziekte: https://www.facebook.com/groups/414238315292893/ (dutch)
- Mitochondrial Disease Awareness and Education: https://www.facebook.com/groups/1442691972612628/ (english)
- Mito Friends (Teens and young adults): https://www.facebook.com/groups/135098276569058/ (english)
- Mito Families!: https://www.facebook.com/groups/185684528113483/ (english)
- Mitochondrial & Metabolic Disease Nutrition Discussion: https://www.facebook.com/groups/62319180185/ (english)
- Mito Adult Support: https://www.facebook.com/groups/mitosupportworldwide/ (english)
- Mito Café: Support for Adults with Mitochondrial Disease: https://www.facebook.com/groups/139235679524129/ (english)
- Miopatia Mitocondrial: https://www.facebook.com/groups/miopatiamitocondrial/ (portuguese)
- Handicap Maladie Rare - myopathies mitochondriales: https://www.facebook.com/groups/128598200492128/ (french)
- Cytopathies Mitochondriales: https://www.facebook.com/groups/918353721529626/ (french)
European organizations
- 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 (FP6/FP7/FP8)
- www.itn-meet.org - Mitochondrial European Educational Training, MEET
Pharmaceutical companies involved in mitochondrial disease research
- BioElectron (former Edison), USA - www.bioelectron.com/"
- Khondrion, The Netherlands - www.khondrion.com/
- Mitobridge, USA - www.mitobridge.com/"
- Modis Therapeutics, USA, see Take On TK2 - www.modistx.com/
- NeuroVive Pharmaceutical, Sweden - www.neurovive.com/
- Reata Pharmaceuticals, USA - www.reatapharma.com/
- Santhera, Switzerland - www.santhera.com/
- Stealth Biotherapeutics, USA - www.stealthbt.com/
- Take On TK2, website for patients and health care professionals by Modis Therapeutics - www.tk2d.com
Various
- German network for mitochondrial disease - www.mitonet.org
- Global Mitochondrial Disease Awareness Week - www.gmdaw.org
- Mitochondrial Medicine Society - http://mitosoc.org/blogs/
- Radboud Center for Mitochondrial Medicine - www.rcmm.info
- Orphanet, international portal for information on rare diseases and orphan drugs - www.orpha.net -
