- The Lily Foundation: http://www.thelilyfoundation.org.uk The Lily Foundation is a UK charity which raises funds for mitochondrial disease research, raises awareness of the condition and supports affected families.
- IMP: https://www.mitopatients.org/ International Mito Patients is a network of national patient organizations involved in mitochondrial disease.
- About Leigh Syndrome https://aboutleighsyndrome.com/ "About Leigh Syndrome" is a first of its kind informational website about Leigh syndrome with resources and support for both families and healthcare professionals.
- Cure Mito Foundation https://www.curemito.org/ Cure Mito Foundation is a nonprofit patient advocacy organization led by parents of affected children. Its mission is to unite the global Leigh syndrome community to accelerate patient-centred research, treatments, and cures.
- LHON Society: http://lhonsociety.org The LHON Society was established to create a home for those in the UK affected by and with an interest in, LHON. Their aim is to provide access to shared experiences of those living with LHON, sources of practical and emotional support, up-to-date information on practical innovation and scientific progress into LHON.
- Mito Foundation: https://www.mito.org.au An Australian charitable organization providing support for patients and families. Mito Foundation is dedicated to supporting the mitochondrial disease community whilst seeking a cure.
- My Mito Mission: http://mymitomission.uk. A UK charity that aims to increase awareness, raise funds for research, support families and above all hope for a cure for everyone with mitochondrial disease.
- UMDF: http://www.umdf.org A US charitable organization providing support for patients and families. UMDF are dedicated to the promotion of research and education for the diagnosis and treatment of mitochondrial disease.
- MDUK: http://www.musculardystrophyuk.org/ Muscular Dystrophy UK is a high-profile charity for patients with muscle disease in the UK. It provides support for patients and families and is a major research funder in the field of muscle disease.
- TREAT-NMD: https://treat-nmd.org/ Treat-NMD is a network for people with neuromuscular diseases and professionals working in this field.
- CLIMB: http://www.climb.org.uk/ Climb is a UK charity providing support and education for children with inborn errors of metabolism. CLIMB funds a number of major research projects.
- Sparks: https://www.sparks.org.uk Sparks is a children’s medical research charity funding research across the whole spectrum of paediatric medicine.
- The Wellcome Trust Centre for Mitochondrial Research: http://www.newcastle-mitochondria.com
- The Centre for Neuromuscular Diseases: http://www.cnmd.ac.uk.
Social Media Support
- Lily Foundation Family Support Group (UK based support for families who have children with mitochondrial disease) - https://www.facebook.com/groups/lilyfamilymitosupport/
- Lily Foundation Adult Support Group (UK based support for adults with mitochondrial disease and their family members/carers) - https://www.facebook.com/groups/404897583338397/
- Mito Adult Support (UK based support for adults with mitochondrial disease) - https://www.facebook.com/groups/mitosupportworldwide/
- Leigh Network (UK based support for families anywhere in the world with Leigh Syndrome and other mitochondrial diseases) - https://www.facebook.com/groups/171119526321329/
- Mito Matters UK (UK based support for patients anywhere in the world, with all types of mitochondrial disease) - https://www.facebook.com/groups/mitomattersuk/
Most of these groups require patients to click the link and request to join. Once approved, you can freely communicate with other mitochondrial patients. Please note that these groups are independent from all UK medical centers, and as a result, information discussed on these sites does not constitute medical advice and should not be treated as such.