Online mito info all in one place
We regularly check the directory content, but please let us know of any more we can add.
The Abel Foundation
The Abel Foundation was created to aid the sufferers of Mitochondrial Disease and help their families deal with this life threatening disease. Currently there is no cure.
We now have a 24-hour support network via phone, email and text and are on hand to help people when they need support or even just someone to listen and can understand what they go through on a day to day basis. We are providing a community room for support groups to meet and share their knowledge.
As we grow we aspire to provide onsite counsellors for hospitals and financial aid to those needing equipment and respite.
Abel Noakes was the inspiration for founding the charity which is named after him. Born in September 2014, he has been battling this disease all of his young life.
Abel’s parents understand the challenges parents and carers face and set up The Abel Foundation to provide assistance to those dealing with this devastating illness.
The Charlie Gard Foundation
The Charlie Gard Foundation aims to be the leading UK charity supporting children, adults and their families that have been affected by mitochondrial disease. We invest in pioneering research into viable treatments for mitochondrial diseases, and collaborate with professionals and experts from around the world to ensure we have every chance of finding that all elusive cure.
Mitochondrial diseases are life limiting, but we are here to make each precious moment count, and provide support and information for every step of your mito journey. We support families from the moment a diagnosis is received all the way to end-of-life care, and everything in between. We are here for you at every stage of your journey and recognise that memory making and family time is of the utmost importance, so we aim to provide an information hub for families affected by mito, but also for families that are touched by a life-limiting condition.
The Children’s Mitochondrial Disease Network
CMDN was the UK’s 1st charity dedicated to specialising in Mitochondrial Disorders. Established as a working support group initially in 1993. Forming as The Children’s Mitochondrial Disease Network in April 1998. Dedicated to support families and professionals in raising awareness and the improved understanding of all neurometabolic mitochondrial disorders, mtDNA, nDNA and those not yet defined at a biochemical genetic level.
The Lacey Pearl Trust Fund
Providing support & equipment to help make home life comfortable as possible, for children living in the UK with Mitochondrial disease.
Founded by Faye Wylie in 2010, after she was diagnosed with Leigh Syndrome, a Mitochondrial Disease.
After studying counselling skills, Faye decided to start her own organisation, bringing together those affected by these diseases- to share information and support each other. Leigh Network has grown to support families all over the UK who are affected by Mitochondrial Disease. Faye also uses Leigh Network to raise awareness of these conditions through the media and via fundraising for Mitochondrial research.
Our Mito Meetings have a very uplifting, positive atmosphere with lots of hope and joy. Look out for our next one!
We are a patient-led support group for a rare condition called Leber’s Hereditary Optic Neuropathy (LHON) – a mitochondrial disease. Our group is comprised of LHON patients, family members and medical professionals. We aim to provide support and information to those impacted by LHON; patients, their family, friends and health care providers, to facilitate research into understanding and seeking ways of preventing and ultimately reversing sight loss in LHON affected patients, provide guidance and representation on issues that affect the LHON community and to promote up to date knowledge and understanding of LHON in the welfare, medical and scientific communities.
The Lily Foundation
The Lily Foundation is the UK’s leading mitochondrial disease charity. Our mission is to improve the lives of people affected by mitochondrial diseases. We are working towards a future where mitochondrial diseases can be effectively treated or cured.
We are actively pursuing our mission objectives in three key ways:
- We provide essential, ongoing support to patients, their families and designated carers.
- We educate, inform and raise public awareness about mitochondrial diseases.
- We fund scientific research into mitochondrial diseases in order to advance the search for effective treatments and cures.
The Ryan Stanford Appeal
Raising money to fund research into Alpers’ Syndrome – a progressive, neurodevelopmental, mitochondrial DNA depletion syndrome characterized by three co-occurring clinical symptoms: psychomotor regression (dementia); seizures; and liver disease.
National or international charities covering all forms of mito, based in (English speaking) countries outside the UK
Hugs for Mito (USA)
Founded in 2017, Hugs For Mito, Inc. has been working hard with our doctor (geneticist and researcher), members and volunteers to help Mitochondrial Disease and Rare Disease patients globally.
Our work is dedicated to funding and delivering charitable services, and we strive to inspire and improve the lives of those who need assistance. Get in touch to learn how you can make a difference at our Disease Research Charity.
IMP – International Mito Patients
Exists to increase the quality of life for people with mitochondrial disease by facilitating cross-border co-operation and collaboration among national patient organisations. To share best practices, information and knowledge, in order to promote early diagnosis; develop appropriate care pathways and clinically manage the disease. To be an international bridge between patients, clinicians, scientists, industry and policy-makers. To promote and advocate for speedy development of treatments and cures.
Mito Action (USA)
MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives.
MitoCanada Foundation (Canada)
Mito Foundation supports people affected by mitochondrial disease (mito), funds essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders, and increases awareness and education about this devastating disease.
Mito Foundation (Australia)
Committed to ensuring that those who live with mitochondrial disease are able to enjoy the best possible quality of life until there is a cure. We are Canada’s only organization for mitochondrial disease awareness, education and advocacy.
United Mitochondrial Disease Foundation (UMDF) (USA)
To promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.
Butterfly Wishes Network
The Butterfly Wishes Network was established in 2012 by a group of like-minded professional photographers who came together with the idea of offering free photography to families of children with a life-limiting or life-threating illness.
Now many years on we are a team of over 400 volunteer photographers who dedicate their time and skills to families all over the United Kingdom.
Child Bereavement UK
Supports families and educates professionals both when a baby or child of any age dies or is dying, and when a child is facing bereavement. Every year we train more than 10,000 professionals, helping them to better understand and meet the needs of grieving families.
Our vision is for all families to have the support they need to rebuild their lives, when a child grieves or when a child dies.
Our mission is to ensure the accessibility of high-quality child bereavement support and information to all families and professionals by increasing our reach and plugging the gaps that exist in bereavement support and training across the country and embedding standards in the sector.
We understand that life with a disabled child brings unique challenges, and we exist to help families feel valued, supported, confident and informed. To make that happen, we work in three closely linked ways. We support families with the best possible guidance and information. We bring families together to support each other. We help families to campaign, volunteer and fundraise to improve life for themselves and others.
Council for Disabled Children
* Note from My mito Mission * CDC does not directly support or advise families but have a useful resource page aimed at parents to which this entry is linked.
The Council for Disabled Children (CDC) is the umbrella body for the SEN and disabled children’s sector in England, with links to other UK nations. We are the only national body that brings together the diverse range of organisations that work with and for disabled children to support the development and implementation of policy and practice.
The UK’s largest charity providing grants for families raising disabled or seriously ill children and young people.
Our mission is to provide items and services to all low-income families in the UK raising disabled or seriously ill children, that they could not otherwise afford or access, and that help improve their quality of life, realise their rights, and remove some of the barriers they face.
Findacure is a UK charity that is building the rare disease community to drive research and develop treatments. We are here to transform the world’s understanding of rare diseases and the devastating impact they have on people’s lives by working directly with patient support groups, giving them the skills to professionalise their work and the confidence to recognise their own expertise in their rare conditions. We accelerate change in rare disease research and care by building a strong, supportive, and collaborative rare disease community that works for the benefit of all rare conditions.
Genetic Alliance UK
We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
Genetic Disorders UK
Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders.
Our mission is to be the leading source of information and support for both those affected by a genetic disorder, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.
Great Ormond Street Hospital Charity
Every day brings new challenges at Great Ormond Street Hospital (GOSH). Every day, 619 children and young people from across the UK arrive for life-changing treatments.
Every day, young lives hang in the balance as patients, families and staff battle the most complex illnesses. Every day, the brightest minds come together to achieve pioneering medical breakthroughs that change the lives of thousands of children – and change the world.
Despite the greatest challenges a child can face, the hospital is a place where being sick does not always mean being sad. And it’s a place where you’ll find – today and every day – some of the bravest people you could ever meet.
This extraordinary hospital has always depended on charitable support, and every day is a chance for you to make a difference.
Together we create life-changing wishes for children with critical illnesses.
Whether it’s starring in their own films, walking with dinosaurs, going on an amazing holiday, meeting a celebrity hero, or having a bedroom makeover; our wishes are varied, personal and life-changing. We go above and beyond to grant amazing wishes to very amazing children; their One True Wish made a reality at a time when they need it most. Because a child’s life shouldn’t be about illness, hospitals and diagnosis – it should be about wonder, joy and hope.
We’ve seen the effects a wish can have on a seriously ill child: from creating incredible memories, building confidence and bringing happiness, to providing respite from the daily struggles that come with a critical illness. We know what wishes can give, and this is the driving force behind why we continue to do what we do.
Metabolic Support UK (formerly Climb)
The leading umbrella patient organisation for all Inherited Metabolic Disorders working hard to:
- Provide patients and families with bespoke support tailored to their needs at all life stages; from point of diagnosis through to young people’s transition into adulthood and beyond.
- Connect families worldwide to reduce isolation and enable them to share experiences.
Fund research to develop treatments and support early diagnosis.
- Work closely with medical professionals to stay ahead in innovations such as newborn screening and treatments.
- Raise awareness of these conditions amongst the medical, health, social care and teaching professions, as well as the general public.
Medicines for Children
Medicines for Children is a partnership programme by the Royal College of Paediatrics and Child Health (RCPCH), Neonatal and Paediatric Pharmacists (NPPG) and WellChild. Our vision is that any parent, wherever they are, has information on their child’s medicines that they need and can trust.
Muscular Dystrophy UK
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals, families and professionals together to fight muscle-wasting conditions. Founded in 1959, we have been leading the fight against muscle-wasting conditions since then.
We bring together more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 70,000 children and adults in the UK.
* Note from My Mito Mission * Muscular Dystrophy UK is in this category as some – but not all – variants of muscular dystrophy are mitochondrial diseases.
Our Nurses support families, our researchers work to improve children’s health, our dedicated team campaign for a fairer deal and our volunteers and supporters know that 100% of every penny they donate or fundraise will be used for equipment to change a child’s life.
There are now around one million disabled and terminally ill children in the UK. Thousands of them rely on Newlife to get the equipment they need, equipment that has often been refused by the statutory services or the delays in provision mean that the child will suffer unnecessarily. Newlife runs the only fast track equipment services in the UK helping those children in urgent need.
Rainbow Trust supports families who have a child aged 0-18 years with a life threatening or terminal illness and need the bespoke support we offer.
Today there are an estimated 49,000 children and young people in the UK living with a life limiting or life threatening condition who may require palliative care (University of Leeds, 2011). Many of these children and their families are able to cope or are not in a ‘crisis situation’. However, thousands of families have to face the very real possibility that their child may die and struggle to cope on a day to day basis.
We support these families who have a child with a life threatening or terminal illness and are in the greatest need. Our Family Support Workers provide a lifeline to these families and children. We support the whole family including parents, carers, the unwell child, brothers, sisters and grandparents. They bring support and help to families who so desperately need it at home, in hospital and in the community. Any family can receive support from the moment of their child or young person’s diagnosis.
Rare Care UK
Care For Now – We are working towards:
- Establishing a database of rare disease charities and organisations so we can point patients in the right direction to get the specialist care and support they need
- Where there is no specialist organisation for people to turn to, we aim to supply a trained nurse who will
- understand the needs of people with rare diseases
- help coordinate care
- listen and provide support
- Enable UK doctors and nurses to be more informed. This will include
- funding visits by UK doctors and nurses to specialist centres outside the UK
- funding for specialists outside the UK to visit us
Hope For The Future – We will encourage scientific research programs which are lacking for many rare diseases, through our advisory board and other contacts and ultimately by providing grants.
Rare Disease UK
We are the national campaign for people with rare diseases and all who support them. We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.
React – Rapid Effective Assistance for Children with potentially Terminal illness is a dynamic charity working to improve the quality of life for children with life-limiting illnesses living in financially disadvantaged households throughout the UK. Our work is unrivalled by any other organisation and our passion and belief that every child should have comfort, dignity, and the opportunity to participate in life as fully as possible is our driving force.
React works to give children comfort, dignity and where possible, greater independence. We supply a wide range of equipment from specialist wheelchairs, beds, baths and mobility aids, to essential everyday homecare items like pushchairs and domestic appliances. This may include educational equipment to ensure a child’s developmental needs are met; React Holidays at one of React’s mobile holiday homes; and, very sadly, funeral expenses and memorial headstones.
Our Mission is to support people of all ages living with a diagnosis of a rare genetic condition, to build lasting positive family memories and strengthen their family relationships, through the granting of Sandcastle Memories. We increase public awareness of the needs and issues that families face when accessing social opportunities; signpost to sources of support and affect positive change through our work.
Our Vision is a future where a diagnosis of a rare genetic condition will not be a barrier to experiencing everything that life has to offer – most importantly enjoying life experiences and making memories as a family.
We support people who are living with a terminal illness, a neurological condition or who have lost a loved one – we’re there when it matters. We give people the compassion and expert care they need to help them live the best life they possibly can.
SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK.
We were established in 2011 thanks to a five-year grant from the Big Lottery Fund and received further funding with a three-year grant in 2016.
It is estimated that around 6,000 children are born every year with a syndrome without a name. Our Big Ambition is that every family affected by a syndrome without a name has the support they need, when they need it, regardless of whether they have a diagnosis or not. We want it recognised that being undiagnosed is not always a temporary stage; the genetic cause of some conditions may never be known. We want every child and young adult with a syndrome without a name to receive high-quality coordinated care and support, both in hospital and at home.
Together for Short Lives
When a child’s life is expected to be short, there’s no time to waste.
Together for Short Lives is the UK charity that is here to make sure the 49,000 seriously ill children and their families can make the most of every moment they have together, whether that’s for years, months or only hours. Many of these children have complex conditions and need specialist care 24 hours a day, seven days a week.
We stand alongside families, supporting them to make sure they get the vital care and help that they need.
Turn2us helps people in financial need gain access to welfare benefits, charitable grants and other financial help – online, by phone and face to face through our partner organisations.
Our mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder or an autosomal dominant single gene disorder and to raise public awareness.
The Young Adult Complex Condition Alliance
We’re an up-and-coming charity which is currently in development. The charity will be launched sometime this year (2020). The charity is being set up to work for young adults, 14-35, with complex health needs as well as their parents and families. We aim to ensure that every young adult, regardless of condition, need or location, has access to the care and support they require to live a rich, fulfilling and enjoyable life. YACCA will be the voice for these young adults and their families, offering direct support, campaigning and lobbying, undertaking projects and developing pilots, seeking to better understand this hidden group of the population and to get young adult care firmly on the agenda.
Founded by Lucy Watts MBE, much work is going on behind the scenes to get the charity set up and launched.
Information and support may be found through such a charity, relevant to that aspect of mito, but which will be not necessarily include any mito specific information or support.
Here we have listed some – but by no means all – of such charities.
Action On Hearing Loss
As the largest charity for people with hearing loss in the UK, we understand how hearing loss can affect everything in your life from your relationships, to your education and your job prospects.
We’re here to support and help you, so you can take back control and live the life you choose.
From day-to-day-care, to practical information, to campaigning for a fairer world for people with hearing loss, and funding research to find a cure, we’re taking action on hearing loss.
We are the leading national charity in the UK for people affected by any type of ataxia. ‘Ataxia’ is an umbrella term for a group of neurological disorders that affect balance, coordination and speech. We fund research into finding treatments and cures, and offer advice, information and support to people affected by the condition.
The Brain & Spine Foundation
The Brain & Spine Foundation is the only UK-wide charity providing information and support for every one of the over 470 neurological disorders which affect 1 in 6 people in the UK.
Our expert services are there for people at every stage, from first symptoms, diagnosis, treatments and in the long term.
Neurological conditions and associated treatments are often complex and poorly understood by those affected and their families. Many people wait for a long time for diagnosis while living with ongoing symptoms and the anxiety of not knowing what the future holds. The Brain & Spine Foundation exists to provide information, answer questions, reduce anxiety and to inform choices.
The Brain Charity
The Brain Charity offers emotional support, practical help and social activities to anyone with a neurological condition and to their family, friends, and carers. There are hundreds of different neurological conditions, including stroke, brain injury, dementia, cluster headaches, and many rarer conditions, – we are here for every single one.
British Heart Foundation
Our vision is a world free from the fear of heart and circulatory diseases. We raise money to research cures and treatments, so we can beat heartbreak forever.
Our vision is that everyone affected by cardiomyopathy should lead long and fulfilling lives.
We are the specialist national charity for people affected by cardiomyopathy. We provide support and information services, work to raise awareness of the condition, campaign for better access to quality treatment and promote research.
We are Diabetes UK. Our vision is a world where diabetes can do no harm.
We’re leading the fight against the UK’s biggest and growing health crisis. And it’s a fight that involves us all – sharing knowledge and taking on diabetes together.
The UK’s leading charity for epilepsy research and support. We set out to make a difference to every person affected by epilepsy whatever their background, however seriously it affects them, and whether they have the condition themselves or are close to someone with epilepsy.
Royal National Institute of Blind People (RNIB)
We recognise everyone’s unique experience of sight loss and offer help and support for blind and partially sighted people – this can be anything from practical and emotional support, campaigning for change, reading services and the products we offer in our online shop.
We’re a catalyst for change – inspiring people with sight loss to transform their own personal experience, their community and, ultimately, society as a whole. Our focus is on giving them the help, support and tools they need to realise their aspirations.
Everyday 250 people begin to lose their sight. RNIB has a crucial role to play in creating a world where there are no barriers to people with sight loss. We want society, communities and individuals to see differently about sight loss.
Sue Ryder (Neurological)
Sue Ryder supports people through the most difficult times of their lives. Whether that’s a terminal illness, the loss of a loved one or a neurological condition – we’re there when it matters.