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

• National Association of Patients with Mitochondrial Diseases, Bulgaria 

  Facebook groups for patients in Dutch

  

  • BOKS vzw 
  • LOA/LHON belangenbehartiging 
  • Ouders van kinderen met een energiestofwisselingsziekte 

  Facebook groups for patients in French

  • Handicap Maladie Rare - myopathies mitochondriales 
  • Cytopathies Mitochondriales 

  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

  • Miopatia Mitocondrial 

  Facebook groups for patients in Spanish

  • AEPMI familias 

   

  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
  • Santhera, Switzerland
  • Stealth Biotherapeutics, USA
  • Take On TK2 - website for patients and health care professionals by Modis Therapeutics

  Other online resources

  • German network for mitochondrial disease
  • World Mitochondrial Disease Week (former Global Mitochondrial Disease Awareness Week)
  • Mitochondrial Medicine Society
  • Radboud Center for Mitochondrial Medicine
  • Orphanet, international portal for information on rare diseases and orphan drugs