My Mito
Directory

Online mito info all in one place

Charities

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.

The Abel Foundation

www.theabelfoundation.org.uk

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

www.thecharliegardfoundation.org

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.

Elliot's Touch

Elliot's Touch

www.elliotstouch.org

Raising funding for research and awareness of cardiomyopathy in children and mitochondrial disease.

The Lacey Pearl Trust Fund

The Lacey Pearl Trust Fund

www.facebook.com/Laceysfightmitochondrial

Providing support & equipment to help make home life comfortable as possible, for children living in the UK with Mitochondrial disease.

Leigh Network

Leigh Network

www.facebook.com/pages/category/Nonprofit-Organization/Leigh-Network-203975279619098

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!

LHON Society

LHON Society

lhonsociety.org

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.

Lily Foundation

The Lily Foundation

www.thelilyfoundation.org.uk

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:

  1. We provide essential, ongoing support to patients, their families and designated carers.
  2. We educate, inform and raise public awareness about mitochondrial diseases.
  3. We fund scientific research into mitochondrial diseases in order to advance the search for effective treatments and cures.
My Mito Mission

My Mito Mission

www.mymitomission.uk

My Mito Mission raises awareness, support, funds and hopes of a cure. We empower those affected to join us with their very own mission. Helping everyone understand that mito matters to MILLIONS.

The Ryan Stanford Appeal

The Ryan Stanford Appeal

www.ryanstanfordappeal.org.uk

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

The Champ Foundation

The Champ Foundation

thechampfoundation.org

The Champ Foundation supports research toward better treatment and a cure for single large-scale mitochondrial deletion (SLSMD) disorders, like Pearson syndrome.

Hugs for Mito

Hugs for Mito (USA)

www.hugsformito.org

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

IMP – International Mito Patients

www.mitopatients.org

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

Mito Action (USA)

www.mitoaction.org

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)

MitoCanada Foundation (Canada)

mitocanada.org

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

Mito Foundation (Australia)

www.mito.org.au

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.

UMDF

United Mitochondrial Disease Foundation (UMDF) (USA)

www.umdf.org

To promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.

These charities cover all illnesses including mito. They may be a source of information and support, but not necessarily mito specific.

Beacon For Rare Diseases

Beacon For Rare Diseases

www.rarebeacon.org

Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone. Our charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. We help these groups maximise their impact and deliver change for the world’s often neglected rare disease patients.

Butterfly Wishes Network

Butterfly Wishes Network

www.butterflywishesnetwork.co.uk

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.

Cerebra

Cerebra

cerebra.org.uk/

In the UK today there are around half a million children and young people with brain conditions that result in complex medical, educational and social support needs. We are a charity that helps these children and their families discover a better life together.

Child Bereavement UK

Child Bereavement UK

www.childbereavementuk.org

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.

Contact

Contact

contact.org.uk

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

Council for Disabled Children

councilfordisabledchildren.org.uk/resources-and-help/im-parent

* 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.

Dreams Come True

Dreams Come True

www.dreamscometrue.uk.com/

We enable children and young people with serious or life-limiting conditions from disadvantaged backgrounds to feel the long-term impact of having a dream fulfilled.

We are passionate about empowering and supporting those who might not even consider having a dream come true.

Growing up with a serious or life-limiting condition can be difficult and, for those living in challenging circumstances, they may face even bigger barriers; however, with your support, we can make dreams come true and bring joy to those who don’t even realise it is possible.

Our Dream Team show the same love, care and attention whether that is a break for a young cancer patient, a specially-adapted trike, a tablet to help an autistic teenager develop their communication skills, or a seriously ill child’s room makeover.

We focus on fulfilling dreams that make the biggest difference to day-to-day lives, working with healthcare professionals for our dream referrals to ensure we can find and help the most disadvantaged young people in the UK, who have additional health or social care needs.

Family Fund

Family Fund

www.familyfund.org.uk

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.

Genetic Alliance UK

Genetic Alliance

https://geneticalliance.org.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.

Gene People

Gene People

https://www.genepeople.org.uk/

Gene People, previously known as Genetic Disorders UK, is a registered charity with a vision to improve the lives of individuals and families affected by genetic conditions.

While individual genetic conditions are rare, it is thought that there are currently more than 6,000 diagnosed conditions and new conditions are being identified every day. It is estimated that 1 in 25 children is affected by a genetic condition. This means that in the UK, 30,000 babies and children are newly diagnosed each year and more than 2.4 million children and adults are living with a genetic condition.

Our mission is to be the leading source of information and support for both those affected by a genetic condition, 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

Great Ormond Street Hospital Charity

www.gosh.org

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.

Make-A-Wish

Make-A-Wish

www.make-a-wish.org.uk

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

Metabolic Support UK (formerly Climb)

www.metabolicsupportuk.org

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

www.medicinesforchildren.org.uk

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

www.musculardystrophyuk.org

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.

Newlife

Newlife

newlifecharity.co.uk

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

Rainbow Trust

rainbowtrust.org.uk

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

Rare Care UK

rarecareuk.org

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

Rare Disease UK

www.raredisease.org.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.

Rays Of Sunshine

Rays Of Sunshine

raysofsunshine.org.uk

We brighten the lives of seriously ill children across the UK aged three to 18 by granting wishes and providing ongoing support in hospitals.

Rays of Sunshine is a national charity that brightens the lives of seriously ill young people by granting wishes and providing ongoing support in hospital and within the community.

React

React

reactcharity.org

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.

Sandcastle Trust

Sandcastle Trust

sandcastletrust.org

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.

Starlight

Starlight

www.starlight.org.uk

Starlight use the power of play to make the experience of illness and treatment better for children and their families.

We are passionate about protecting time for play. We champion play’s importance and defend every seriously ill child’s right to it. Our passion takes us to the bedsides of some of the most poorly children in the UK. We use the power of play to create a sense of escape from the difficult reality in which these children find themselves. To delight and distract. To entertain and enlighten. But, most of all, to restore a smile to their faces.

Play is important. Play is invaluable. Play is vital.

Sue Ryder

Sue Ryder

www.sueryder.org

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

Swan UK

www.undiagnosed.org.uk

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

Together for Short Lives

www.togetherforshortlives.org.uk

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

Turn2Us

www.turn2us.org.uk

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.

Unique

Unique

www.rarechromo.org

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.

WellChild

WellChild

www.wellchild.org.uk

Through a nationwide network of WellChild Nurses; home and garden transformation projects; and family information, training and support programmes, WellChild makes it possible for children and young people with complex health needs to be cared for at home instead of hospital, wherever possible.

When you Wish Upon A Star

When you Wish Upon A Star

www.whenyouwishuponastar.org.uk

When You Wish Upon a Star has a simple mission, to grant the Wishes of children living with a life threatening illness. The charity was founded in Nottingham by Barbara White OBE who was so inspired by a seriously ill four year old with a dream to meet Mickey Mouse that she wanted to bring smiles to the faces of many more brave and courageous children. Our Wishes have the power to transform the lives of the children and families we work with and since 1990 we have proudly granted over 18000 Wishes across the UK.

Some children Wish to be a fairy princess or soldier for the day, meet celebrities or sporting heroes that range from the Red Arrows to Mary Berry and others Wish for a laptop to keep in contact with their friends and family whilst in hospital. One of our most popular Wishes remains the exciting opportunity to swim with dolphins and meet all their favourite characters in Disney World, Florida.

In addition to our Wishes throughout the year, we also organise a number of days out and treats for the children like our incredible Harry Potter-themed trips on-board the beautiful Belmond Northern Belle train, where characters entertain the children on their journey with weird and wonderful magic, flying broomsticks, props and costumes, keeping them amazed and entertained all day.

Every December the charity also enables hundreds of children to swap hospital beds for sleigh rides transporting them away from appointments, treatments and injections to the winter wonderland of Lapland in Finland on board our Santa Express flights.

We believe every child deserves to smile and with your support we can provide time away, giving children and their families something to look forward to through times of uncertainty and often financial as well as emotional strain. Wishes and Treats allow the family to put their child’s illness on hold as they have fun and create precious memories.

These charities are for specific conditions which mito can cause. Therefore they will not necessarily be able to give any mito specific information or support.

Ataxia UK

Ataxia UK

www.ataxia.org.uk

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.

BlindAid

BlindAid

www.blindaid.org.uk/

We provide an integrated approach to fit the varying needs of people living with visual impairment.

Brain and Spine

The Brain & Spine Foundation

www.brainandspine.org.uk

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

www.thebraincharity.org.uk

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 Deaf Association

British Deaf Association

bda.org.uk

The BDA is the UK’s leading membership organisation and registered charity run by Deaf people for Deaf people. The BDA delivers a range of services to achieve its aims of empowering Deaf people to overcome difficulties that they face on a daily basis.

British Heart Foundation

British Heart Foundation

www.bhf.org.uk

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.

British Liver Trust

British Liver Trust

https://britishlivertrust.org.uk/

Liver disease is a public health emergency.
It is diagnosed too late and is the biggest killer of 35 to 49 year olds.
We need to act now to save lives and this is what underpins our Sound the Alarm campaign.
We are calling on the government to implement 10 key changes that will directly impact outcomes for patients, ensuring that more people are diagnosed with liver disease or liver cancer at an earlier stage and ensure that improvements are made to the support, specialist care and treatment available to patients following diagnosis.
The campaign has been backed by some of the top liver specialists in the UK, including The British Association for the Study of Liver Disease, the British Society of Gastroenterologists and Foundation for Liver Research.

British Society For Heart Failure

British Society For Heart Failure

www.bsh.org.uk

We, the British Society for Heart Failure (BSH) lead the way in educating doctors, nurses and allied specialists working in hospitals and the community so we can all improve care for patients with heart failure.

We are proud to have a representation of over 1500 professional individuals from across the clinical community on our membership. It is our aim to equip healthcare professionals, including those most closely involved in caring for people with heart failure with up to date specialist education and research.

The advice and guidance of a specialist is essential for planning care and for specialist intervention. All patients with chronic conditions should have access to a multi disciplinary team. Those patients who need the expertise of a heart failure specialist should have access to one. It is our intention as BSH to continue to grow the network of HF specialist throughout the country so no patient in need goes without the care they require.

Together, we can make heart failure a national priority through our work, research and education, with the aim of preserving life, increase survival and improve quality of life for the nearly 1 million living with heart failure in the UK today.

Cardiomyopathy UK

Cardiomyopathy UK

www.cardiomyopathy.org

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.

Children's Heart Federation

Children's Heart Federation

chfed.org.uk/

Congenital Heart Disease (CHD) is the most common birth defect in the UK. Thousands of babies are born with a heart problem each year and hundreds of children develop a heart condition at some point after birth.

The Children’s Heart Federation (CHF) is the leading UK children’s heart charity and works with individuals and organisations concerned with children and young people with health and educational needs due to acquired or congenital heart conditions.

CHF was registered with the Charity Commission in 1988 and is administered and managed by a board of trustees.

Children's Liver Disease Foundation

Children's Liver Disease Foundation

childliverdisease.org

Formed in 1980, Children’s Liver Disease Foundation is the only UK charity dedicated to fighting all childhood liver diseases.

Diabetes UK

Diabetes UK

www.diabetes.org.uk

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.

Epilepsy Society

Epilepsy Society

www.epilepsysociety.org.uk

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.

Guts UK

Guts UK

gutscharity.org.uk/

Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.
People are suffering.

People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that.

Our guts have been underfunded, understaffed and undervalued for decades. Together, we will join forces and bring about important change in this misunderstood area of health.

Since 1971 we have funded almost 300 projects and invested nearly £16 million pounds into medical research that leads to better diagnoses and treatments for the millions of people who, like us, don’t have the luxury of taking our guts for granted.

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Guts UK’s research leads to earlier diagnoses, kinder treatments and ultimately, a cure.

Guts UK’s vision is of a world where digestive disorders are better understood, better treated and everyone who lives with one gets the support they need.

Heart Research UK

Heart Research UK

heartresearch.org.uk

We fund pioneering medical research into the prevention, treatment and cure of heart disease.

We fund pioneering medical research into the prevention, treatment and cure of heart disease. We’re helping communities

Kidney Research UK

Kidney Research UK

www.kidneyresearchuk.org

As the leading kidney research charity in the UK, nothing is going to stop us in our urgent mission to end kidney disease. We’re here to be heard, to make a difference, to change the future. This is a disease that ruins and destroys lives. It must be stopped.

Over the past 60 years, our research has made an impact. But kidney failure is rising, as are the factors contributing to it, such as diabetes and obesity.

Today, we are more essential than ever.

Kidney disease affects three million people in the UK, treatments can be gruelling and currently there is no cure. Only research will end this and nobody can do it but us, by offering kidney patients and their families hope for the future. We’re taking it on. But we can’t do it without you.

The Liver Group Charity

The Liver Group Charity

www.ucl.ac.uk/livergroup/

We are a medical research charity with the objective of improving the treatment of Liver Disease through research. Our focus has been on the development of a Bio-Artificial Liver Machine - something that will prove as important to the treatment of liver disease as kidney dialysis is to those with kidney failure.

We are striving so everyone has a 'Liver for Life'.

Muscular Dystrophy Association

Muscular Dystrophy Association

www.mda.org/

Families are at the heart of MDA's mission. We wake up every morning to create more hope and answers for families living with muscular dystrophy and related neuromuscular diseases that take away physical strength and mobility. We fund groundbreaking research for promising treatments and provide families with the highest quality care from the best doctors in the country.

The Neurological Alliance

The Neurological Alliance

www.neural.org.uk

We are on a mission to ensure that every person with a neurological condition has access to high quality, joined up services and information from their first symptoms, throughout their life.

The right treatment, care and support at the right time matters. High quality, joined up care makes a real difference to quality of life people living with neurological conditions, their families, carers and loved ones.

That’s why we campaign together to ensure every person with a neurological condition is able to access the right treatment and care.

Part Sight

Part Sight

www.partsight.org.uk

The Partially Sighted Society provides information, advice, training, magnifiers and electronic low vision aids and clear print material for anybody with a visual impairment to help them to make the best use of their remaining sight.

The Partially Sighted Society has been in existence for over 50 years. Our aim is to help people with sight loss make the best use of their remaining vision.

PKD Charity

PKD Charity

pkdcharity.org.uk

We provide support to patients, carers and family members. We fund innovative research. We publish reliable information about ADPKD and ARPKD. We organise educational events.

PKD Charity

Pumping Marvellous

www.pumpingmarvellous.org

We offer support to sufferers of heart failure their carers and family. We support you by talking through problems and by you sharing your challenges, we feel as though we can reduce the burden.
We represent the opinions and needs of heart failure patients across the UK. We give the patient a voice where representation is needed, at the top table. We demonstrate the needs of patients via patients through their experiences.
We offer patients and families the help on how to self-manage your heart failure through coaching and developing you through the peaks and troughs of managing heart failure.
We work with clinicians and decision-makers as to how the patient voice can improve care to people suffering from heart failure.
We work with all stakeholders in heart failure to ensure that the patients needs around access to the latest therapies are heard. We work towards universal access of the best drugs and interventions.
Awareness is key to increasing the quality of care for people suffering from heart failure as without awareness then we feel that heart failure doesn’t have the voice its impact warrants.

RNIB

Royal National Institute of Blind People (RNIB)

www.rnib.org.uk

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.

RNID

rnid.org.uk/

We are the charity making life fully inclusive for deaf people and those with hearing loss or tinnitus. Together, we campaign for an inclusive society. We connect people to practical advice and pioneer new treatments for hearing loss and tinnitus.

Sue Ryder (Neurological)

Sue Ryder (Neurological)

www.sueryder.org

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.

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