My Mito
Directory
Online mito info all in one place
Peer Support Groups
Our directory is aimed at saving you time searching the internet. We welcome any additions or feedback.
Please be aware that we can’t vouch for the content of the sites we find, and all descriptions are taken from those sites.
Kearns Sayre Syndrome & Chronic Progressive External Ophthalmoplegia
A group for suspected sufferers and those diagnosed with CPEO, CPEO + and KSS and related conditions. Please post items related to Mito – KSS/CPEO etc and living with the condition. Items off-topic maybe removed.
427 Members (at February 2020)
Leigh Network
This is the Leigh Network Family Group page. Leigh Network is for everyone affected by a Mitochondrial illness. Here we can share our ideas for future meetings and events and raise awareness as well as, of course, getting to know each other!! Leigh Network hopes to enable each of you to feel at ease when sharing your posts with us and to learn from each other’s experiences as well as from the doctor who gives talks at our Leigh Network Mito Meetings. Anyone wishing to join this closed group will be messaged to see how Mitochondrial Disease affects them or their family.
Many thanks for your patience and support. I hope you enjoy 
237 Members (at February 2020)
The Lily Family Mitochondrial Disease Support Group
This group is for all our families affected by Mitochondrial Disease. It is a place to meet people, share experiences & information. Its a closed group so only members can view posts. We see this group as a warm a friendly place where people can find comfort and support.
460 Members (at February 2020)
The Lily Adult Mito Support Group
Welcome to our Facebook group (the “group”). This group is for UK adults (18 years and above) affected by Mitochondrial Disease. It is a place to meet people, share experiences and information. It is a ‘closed group’ so only members can view posts. We see this group as a warm a friendly place where people can find comfort and support.
299 Members (at February 2020)
LHON Society
This group welcomes people affected by LHON, their family members and friends. We also welcome people with a medical or research interest in LHON. This group is run by the LHON Society, a charity based in England, and will focus on things relevant to people in the Channel Islands, England, Ireland, Isle of Man, Northern Ireland, Scotland and/or Wales. LEBER’S HEREDITARY OPTIC NEUROPATHY SOCIETY is a charity registered with the Charity Commission for England and Wales. Registered Charity Number 1157206 We encourage people to also join the international “Leber’s Hereditary Optic Neuropathy” group. LHON is an optic nerve disorder that can suddenly cause loss of central vision. it is a genetic mutation passed down from the mother to all offspring, however not everyone who carries a LHON mutation loses vision. It is a very rare condition, affecting about 1 in 50,000 people.
729 Members (at February 2020)
MELAS Rare Disease
MELAS is a rare hereditary Mitochondrial disease. As a neurodegenerative disorder you may see Strokes/stroke like episodes, seizures, heart issues, or a variety of other symptoms. I created this group as a support for those who have MELAS (and other Mitochondrial disease) in their family. For me it was my husband that had MELAS. He had his first stroke in 1999 and he passed away with his 9th stroke in 2016. While we struggled with the diagnoses and trying to find resources, I reached out to the internet to find others that also had MELAS. This group was created to be a safe space to talk about MELAS…
402 Members (at February 2020)
MERRF
A support group for people affected by MERRF which is a Mitochondrial Disorder. Please take advice from group members at your own risk. Advice is given on our own personal experience in dealing with ours or our loved ones condition. Please do not post products for sale on this page, thank you.
92 Members (at February 2020)
Mito Adult Support
A group for adults with mitochondrial disease to talk about life with a mitochondrial disease and support each other. We ask you that you respect what people are going through and if you have any problems with other members then get in touch with us and we’ll try sort it out. Political posts will be deleted as this is a support group. There are other such mito groups that welcome them.
This group is based in a Newcastle Uk
ALL are welcome including family members! Xx
1240 Members (at February 2020)
Mito Matters UK
A networking and support group for sufferers of Mitochondrial Disease and others affected (carers/relatives) by ‘Mito’ in the UK – England, Ireland, Scotland, and Wales. Specifically for discussing issues pertinent to receiving care and support in this region.
327 Members (at February 2020)
Mito Mums
This group is a secret group meaning no one will know you are a member. Its a place to come and talk confidentially about being a Mito Mum
As there are lots of facebook groups, we have included the mito-specific ones as opposed to more general groups which cover mito. Group descriptions are as described by themselves.
International Mito Patients (IMP)
This closed Facebook group has been created as a forum for people affected by mitochondrial disease to seek and offer support, share information and connect with others within the international mito community.
711 Members (at February 2020)
CPEO/KSS
THIS IS A GROUP FOR THOSE WHO HAVE CPEO/KSS OR THEIR FAMILY MEMBERS. THIS GROUP IS SPECIFIC TO
Two of the most common Mitochondrial Myopathies
Chronic Progressive external ophthalmoplegia (CPEO)
Kearns-Sayre syndrome (KSS.
543 Members (at October 2022)
Adult Mito Matters
Welcome to Adult Mito Matters, a group where we can share our Mito journeys, education, advice and tips, trial info., Mito news and updates. Plus Make friends, support each other and have fun! We are not alone in this journey and we all matter. As an adult with Mito, I find the best support and understanding comes from other adults with Mito. Thanks for joining, we are glad you’re here! Welcome.
313 Members (at February 2020)
Lebers Hereditary Optic Neuropathy Plus (LHON PLUS)
Lebers Hereditary Optic Neuropathy Plus (LHON PLUS) is a mitochondrial disease. This group welcomes people interested in finding out more about LHON PLUS and LHON PLUS patients.
1351 Members (at October 2022)
MELAS Syndrome and MIDD International Support Group
MELAS is a Mitochondrial disease. MELAS is an abbreviation that stands for Mitochondrial Encephalomyopathy, Lactic Acidosis, and Stroke-like episodes.
MIDD is also a mitochondrial disease. MIDD is an abbreviation that stands for Maternally Inherited Diabetes and Deafness.
MELAS Syndrome and MIDD International Support Group is a Facebook Group with the purpose to share information and knowledge, alongside with other groups.
Medical professionals, caregivers, family and friends - are also welcome to join this group.
As a founder of this support group, it's my goal to share information that gives hope and strength. Biomedical research leads to progress and development of new treatments!
Even a single thread of hope is still a powerful thing!!
1303 Members (at October 2022)
MitoAction
MitoAction is a nonprofit organization that exists to improve quality of life for all who are affected by mitochondrial disease. We provide support, education and advocacy tools for adults, children and their families. Our mission is to help patients LIVE with mitochondrial disease. Please note that use of this MitoAction Facebook discussion group is governed by MitoAction’s Terms of Use: http://www.mitoaction.org/terms-use Please visit and become a fan of our main Facebook page to keep up with all of the latest news and happenings: http://www.facebook.com/mitoaction
5699 Members (at February 2020)
Mito Cafe: Support For Adults With Mitochondrial Disease
This group is specifically geared toward adults (18+) who wish to discuss living with mitochondrial disease and the various challenges the diagnosis causes. Other members of the mitochondrial disease community (including caregivers, medical professionals, friends, and family) are welcome to join and participate.
Mitochondrial Disease Awareness & Education
Here is a place we can share our own ideas with promoting awareness and education on Mitochondrial Disease. I would love to see us all come together and feed off each other with positive ideas in organizing events, big and small, to be used to get the word out. We all come from different areas, even countries and that means we, separately, can play a huge role in making this disease known all over the world. Let’s use this group to run off ideas and to plan how we can make mito a household word which will potentially help all of us in research and a cure!
4570 Members (at February 2020)
Mito Families!
Mito Families! is a group for ALL people affected by mitochondrial disease. Whether that is your child, you, a grandchild, niece etc. We are a non-medical group designed to share our experiences, encouragement, and HOPE for a brighter, healthier future.
3206 Members (at February 2020)
Mito Friends (Teens and Young Adults)
This is a great group for young adults and teens to connect. A safe, supportive space for us to share separate from the adult forums; for teens to twenties (originally based on UMDF’s teen and young adult sessions). This group is for teens and youth, not their parents, friends, significant others, or siblings.
367 Members (at February 2020)
Mito Singles Support and Inspiration
This group is being formed for mito patients who are single and face different challenges due to it. It is to support and encourage one another both physically or emotionally. Some of us are living alone independently, some unable to have children, have children, lack of social interaction, mates, Ect., and face the daily challenges of being a single person. Help me invite your friends. I want to this to be a safe haven, fun, encouraging and welcoming environment for all members!
267 Members (at February 2020)
Mito Support Community
This group is an online support group for people with a close connection to mito including people who have mito, family members, carers and friends to connect with others in the mito community. We encourage members to share their day-to-day experiences with mito, tips and advice on living with mito and ask about others’ experiences.
1142 Members (at February 2020)
PDCD Parents & Friends - Pyruvate Dehydrogenase Complex Deficiency
This group is for Parents, Family Members, and Friends of those suffering from PDCD - Pyruvate Dehydrogenase Complex Deficiency. Please feel free to post questions, frustrations, prayer requests, pictures, or whatever you feel you need to share while dealing with this desease. We are all in this together. There are not many of us, but if we stick together and support each other, it will make the journey easier for all of us
753 Members (at October 2022)
Pyruvate Dehydrogenase Complex Deficiency (PDCD) Parents and Guardians
This group is a support group exclusively for parents/guardians and those with a CONFIRMED diagnosis of Pyruvate Dehydrogenase Complex Deficiency. In order to be accepted into our group you must first answer the questions. If you provide no answers, your request will be denied. Our group is meant to be a place where we can ask the more sensitive questions directly to other parents or those who are diagnosed with PDCD. As many of you know, we have another group for friends and family. This group is not in any way meant to take away from our friends and family group. It's so important that we continue to post and share there because as you know, the support of friends and family means the world.
407 Members (at October 2022)
United Mitochondrial Disease Foundation (UMDF)
The goal of this Facebook Group is to connect patients and families who are affected by, or suspected of having mitochondrial disease and to provide them with an opportunity to share experiences, provide helpful resources, and to network among each other.
9647 Members (at February 2020)
Inspire
www.inspire.com/groups/united-mitochondrial-disease-foundation
United Mitochondrial Disease Foundation (UMDF) Mito Energy Connection – Mitochondrial disease support group and discussion community
RareConnect
www.rareconnect.org/en/community/mitochondrial-diseases/members
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
The Mighty
themighty.com/topic/mitochondrial-disease
The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities.
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