National organisations

This section will provide information about the organisations which provide information and suport for, and carry out research into neurological conditions. These organisations aim to inform and advise patients, carers, and other people affected by a neurological condition.

Interested in becoming a member of the Neurological Alliance? Find out more.

Action Duchenne

Action Duchenne logo

www.actionduchenne.org

Action Duchenne was established to find a cure or more effective medicines to treat duchenne muscular dystrophy. They fund research projects and support clinical trials that are making real progress towards their aim of finding the best care for those living with Duchenne and working towards a cure.

Ann Conroy Trust

www.annconroytrust.org.uk

The Ann Conroy Trust CIO provides support for those living with the rare, complicated conditions Chiari Malformation and Syringomyelia. The charity also funds training days for medical professionals and the funding of appropriate research.

Association of British Neurologists

Association of British Neurologists logo

www.abn.org.uk

The Association of British Neurologists aims to encourage nationwide availability of excellent and equitable neurological services. It supports neurologists and neurological trainees in their clinical practice, research and academic activities and fosters communication with patient interest groups.

Ataxia UK

www.ataxia.org.uk

Ataxia uk

Ataxia UK supports medical research into causes and potential therapies. They provide information, advice and support to people affected by ataxia.

Autistica

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/www.autistica.org.uk

Autistica is the UK’s leading autism research charity, which works to ensure everyone affected by autism has the chance of a long, happy, healthy life.

Batten Disease Family Association

Batten Disease Family Association logo

www.bdfa-uk.org.uk

The Batten Disease Family Association is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as batten disease. They work with children, young people, families and professionals across the UK.

Brain and Spine Foundation

Brain and Spine Foundation logo

Brain and Spine helpline; 0808 808 1000
Email: info@brainandspine.org.uk
www.brainandspine.org.uk

The Brain and Spine Foundation aims to improve the quality of life for people with neurological disorders and to reduce neurological disability through research, education, and patient and carer support and information programmes.

Brain and Spinal Injury Charity (BASIC)

Basic

www.basiccharity.org.uk

BASIC was established in 1986 and provides over 30 services under one roof for those recovering from acquired brain injury. BASIC takes over when people have been discharged from hospital and are faced with the challenges of recovery from a head injury, brain haemorrhage, brain tumour, stroke or similar.

The Brain Charity

www.thebraincharity.org.uk

This charity provides non-medical information and support to people with a neurological condition and their families, including library facilities, project and office base for neuro charities, programme of conferences and meetings.

Brain Research Trust

www.brt.org.uk

There are hundreds of neurological conditions and Brain Research Trust funds the best research at centres of excellence throughout the UK to discover the causes, develop new treatments, and improve the lives of those affected.
The charity helps to accelerate the progress of brain research by encouraging scientists to share knowledge and by nurturing future talent.

The Brain Tumour Charity

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www.thebraintumourcharity.org

The Brain Tumour Charity is the leading, caring charity committed to fighting brain tumours. Their personalised support is available online, on the phone, by email and through support groups. Their scientific research improves the quality of life for brain tumour patients and identifies better treatments. They raise awareness to change things for the better, for everyone affected by a brain tumour.

British Paediatric Neurology Association

British Paediatric Neurology Association logo

www.bpna.org.uk

The British Paediatric Neurology Association is the professional organisation for doctors who specialise in the care of children with neurological disorders. Membership is open to those devoting the majority of their time to paediatric neurology, paediatric neurodisability and allied neurosciences.

British Polio Fellowship

British Polio Fellowship logo

www.britishpolio.org.uk

The British Polio Fellowship provides a wide range of information and advice about disability in general, polio and post-polio syndrome. They also provides support to people affected by polio.

Cavernoma Alliance UK

Cavernoma Alliance UK

www.cavernoma.org.uk

Cavernoma Alliance UK is a support group for those with cavernoma. It also aims to makes the general public aware of cavernoma.

Chartered Society of Physiotherapy

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www.csp.org.uk

The Chartered Society of Physiotherapy leads, promotes and represents the profession by driving excellence in physiotherapy practice and employment, and influencing healthcare policy across the UK.

Child Brain Injury Trust

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childbraininjurytrust.org.uk

Support and information for families and professionals who are affected by acquired brain injuries. CBIT is a national charity delivering projects and support through a helpline, parent support groups, books, leaflets and a web site. CBIT operates a small grant programme for children and young people, work in a participative environment and specialise in influencing the way in which serves are deliver.

CMT UK

CMT UK logo

www.cmt.org.uk

CMT work to support those who are affected by Charcot-Marie-Tooth Disease, also known as Hereditary Motor and Sensory Neuropathy or Peroneal Muscular Atrophy. They offer assistance and support to those with this condition. They promote and research into the means by which CMT may be prevented and treated and to disseminate the results of such research for the benefit of the public

Cure Parkinson’s Trust

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www.cureparkinsons.org.uk

The Cure Parkinson’s Trust is a patient led charity that funds research which will have an impact on the lives of people with Parkinson’s, with the hope of an eventual cure for the condition.

The Daisy Garland

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www.thedaisygarland.org.uk

Set up in 2004, The Daisy Garland is a family-run, national, UK registered charity, which offers help and support to those whose lives are touched by drug resistant epilepsy.

The Daisy Garland funds an increasing number of Ketogenic Dietitians in NHS hospitals across the UK and provide help with support equipment for use at home.

Developmental Adult Neuro-Diversity Association (DANDA)

www.danda.org.uk

DANDA is the first national charity in the world specialising exclusively in all types of neurodiversity in adulthood, user-led or non user-led. DANDA helps adults with developmental dyspraxia, dyslexia, Asperger’s syndrome, AD(H)D, dyscalculia and related conditions reach their full potential. DANDA also provides support and raises awareness.

Different Strokes

Different Strokes logo

www.differentstrokes.co.uk

Run by stroke survivors for stroke survivors, Different Strokes aims, through active self help and mutual support, to help younger stroke survivors to optimise their recovery, take control of their lives and regain as much independence as possible. They also organise exercise classes nation-wide.

Dystonia Society

Dystonia Society  logo

www.dystonia.org.uk

Dystonia Society provides support for people with dystonia, and their families, through the promotion of awareness, the publication of literature and medical research and welfare.

Encephalitis Society

www.encephalitis.info

The Encephalitis Society supports adults and children affected by encephalitis, their families and carers by providing advice and information and working at national level to improve services.

Epilepsy Action

Epilepsy Action logo

www.epilepsy.org.uk

Epilepsy Action provides advice and information services for people with epilepsy, their families and those who care for them. They also campaign for improved health and social services.

Epilepsy Society

Epilepsy Society logo

www.epilepsysociety.org.uk

Epilepsy Society is a leading national epilepsy medical charity working for everyone affected by epilepsy, through research, awareness campaigns and expert care.

Fighting Strokes

www.fightingstrokes.org

Fighting Strokes lobby for stroke care policy changes; educate and promote stroke recovery awareness and provide practical advice and support to patients, their families and friends. Their goal is to improve patient outcomes and speed up recovery rates and levels.

FND Action

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www.fndaction.org.uk/

FND Action is a registered charity in England and Wales, which aims to raise awareness of functional neurological disorder (FND) and Non Epileptic Attack Disorder (NEAD), and provide a support network across the UK for those diagnosed and their families and carers.

Forward ME

Forward M.E. logo

www.forward-me.org.uk

The aim of Forward-ME is to promote effective joint working by myalgic encephalomyelitis and chronic fatigue syndrome organisations to maximise impact on behalf of all people with myalgic encephalomyelitis and chronic fatigue syndrome in the UK.

Glenside Manor

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www.glensidemanor.co.uk

Glenside specialise in neuro rehabilitation and offers a complete range of inpatient and outpatient medical care and rehabilitation services to adults who are living with severe physical, cognitive or behavioural impairments resulting from long-term neurological conditions, including acquired or traumatic brain injury.

Guillain Barré and Associated Inflammatory Neuropathies

Gain

www.gbs.org.uk

GAIN offers support and information to those affected by Guillain-Barré syndrome, CIDP and other dysimmune neuropathies throughout Britain and Ireland.

Headway – The Brain Injury Association

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www.headway.org.uk

Headway supports people with brain injury, their families and carers and concerned professionals. They have groups throughout the UK, many of which run activity/rehabilitation centres called Headway Houses. They campaign for improved statutory services for people with brain injury.

HemiHelp

HemiHelp logo

www.hemihelp.org.uk

HemiHelp is a membership organisation offering information and support to children and their families affected by hemiplegia.

Huntington’s Disease Association

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www.hda.org.uk

The Huntington’s Disease Association exists to support families affected by Huntington’s disease. They are a patient organisation and the main thrust of our work is to provide care, advice, support and education to families and professionals caring for someone with the illness, the individual themselves, and those at risk of developing it.

IIH UK James Lind Alliance Priority Setting Partnership (PSP)

www.iih.org.uk

The James Lind Alliance (JLA) is a non-profit making initiative bringing patients, carers and clinicians together in Priority Setting Partnerships (PSPs). These partnerships identify and prioritise uncertainties, or ‘unanswered questions’, about the effects of treatments.

The JLA PSP into IIH is being funded by the IIH UK. The aim is to identify unanswered questions about diagnosis, management and care provision of IIH to form a list of top ten questions for researchers to answer.

This process will help ensure that research into clinical practice and services identifies and addresses the questions that are of most importance to those affected by the condition.

I Have IIH Foundation

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www.ihaveiih.com

The I Have IIH Foundation is patient support and advocacy charity based in the UK, who are passionate and dedicated to raising awareness for idiopathic intracranial hypertension (IIH) worldwide. They help people adapt to life with IIH, by providing practical advice, help and the information.

IIH UK

www.iih.org.uk

IIH UK is dedicated to providing sources of information and support to those with Idiopathic Intracranial Hypertension, and all who support them. They promote awareness, facilitate research, and advocate the Charity’s public, social and support activities.

Independent Fetal Anti Convulsant Trust (INFACT)

INFACT

www.facsa.org.uk

INFACT’s work entails providing long term support for those affected by Anti-Convulsant Drugs in pregnancy, and working with a wide range of professionals in raising awareness for Fetal Anti-Convulsant Syndrome within Government and Health Agencies.

Association of Independent Healthcare Organisations

AIHO logo

www.independenthealthcare.org.uk

The Association of Independent Healthcare Organisations is the trade association for independent healthcare organisations.
They bring together members and specialists across the health care industry, to share a unique level of knowledge, experience and understanding.

Integrated Neurological Services

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www.ins.org.uk

Integrated Neurological Services provide long-term rehabilitation and support for people with neurological conditions.

Joint Epilepsy Council

www.jointepilepsycouncil.org.uk

The Joint Epilepsy Council is an umbrella organisation that exists to enable epilepsy organisations to work together for the benefit of people who have epilepsy.

Matthew’s Friends

http://site.matthewsfriends.org

Matthew’s Friends provides information, research, training and support for parents and professionals regarding dietary treatment for epilepsy. Their goals is to improve services and lives of adults and children with refractory epilepsy.

ME Association

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www.meassociation.org.uk

The ME Association funds and supports research into myalgic encephalomyelitis , and provides information and support, education and training.

Metachromatic Leukodystrophy Support Association UK

www.mldsupportuk.org.uk

MLD Support Association UK supports families and sufferers of MLD by way of shared information from people in similar circumstances . They also support research into therapeutic treatments for the condition through research grants.

Migraine Trust

The Migraine Trust logo

www.migrainetrust.org

The Migraine Trust focuses on those who suffer from migraine and other headache conditions. They aim to maximise management and minimise impact of the condition through funding research, education, promotion and support.

The Money Advice Service

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www.moneyadviceservice.org.uk

The Money Advice Service, set up by government, offers free and impartial money advice.

Motor Neurone Disease Association

Motor Neurone Disease Association logo

www.mndassociation.org

The Motor Neurone Disease Association works to ensure that people affected by motor neurone disease secure the highest standards of care in order to achieve quality of life. They stimulate and fund research into the causes of motor neurone disease. They provide a helpline, information, equipment loan, financial support, a network of regional care advisers, local branches and volunteer visitors.

Multiple Sclerosis National Therapy Centres

MS NTC logo 2016

www.msntc.org.uk

The MS National Therapy Centres harness the power of collective action to support member centres in the delivery of services which will improve the quality of life for everyone using those services.

Multiple Sclerosis Society

Multiple Sclerosis Society logo

www.mssociety.org.uk

The Multiple Sclerosis Society provide support and information for people affected by multiple sclerosis through a network of branches and through helpline and publications. They carry out research into multiple sclerosis and policy work and campaigns on multiple sclerosis issues. They also provides respite and holiday homes.

Multiple Sclerosis Trust

Multiple Sclerosis Trust logo

www.mstrust.org.uk

The Multiple Sclerosis Trust is a leading UK charity for people with multiple sclerosis, their families and friends, and for the health and social care professionals who work with them. They provide Information about multiple sclerosis; education for nurses and other professionals; carry our research which is relevant to people who live with multiple sclerosis; and they support for multiple sclerosis specialist nurses

Multiple Sclerosis UK

www.ms-uk.org

Multiple Sclerosis-UK is a national multiple sclerosis (MS) charity dedicated to empowering people with multiple sclerosis to make the most of today, and live life to the full. They provide high quality, professional services to support people living with multiple sclerosis, and listen to people affected by MS

Multiple System Atrophy Trust

Multiple System Atrophy Trust logo

www.msatrust.org.uk

The Multiple System Atrophy Trust provides information and support to people living with multiple system atrophy and their families; raises awareness of the condition and its treatment, especially among healthcare professionals; and promotes and sponsors research into multiple system atrophy, its cause, treatment and ultimately its cure.

Muscular Dystrophy Campaign

www.muscular-dystrophy.org

The Muscular Dystrophy Campaign meets the needs of people with neuromuscular conditions in the UK, their carers and their families.

Myaware

www.myaware.org

Myaware

The Myaware offers support to myasthenics and their families, increasing public and medical awareness and raising funds for research. They act as a contact point putting sufferers and their families in touch with each other so that they do not feel isolated in dealing with this rare disease. They also put members in touch with other appropriate agencies for any specific problems they are facing, for example problems with benefits.

Narcolepsy UK

www.narcolepsy.org.uk

Supporting people with narcolepsy, their families, carers and others interested in improving their quality of life. They provide information about narcolepsy for education and health professionals and campaign for access to medication and benefits to support those living with this rare neurological condition.

The National Brain Appeal

The National Brain Appeal

http://www.nationalbrainappeal.org/

The National Brain Appeal is the charity dedicated to raising much needed funds for The National Hospital for Neurology and Neurosurgery in Queen Square London.

National ME Centre

www.nmec.org.uk

The National ME Centre provides consultant led clinics to confirm the diagnosis of ME and offer advice on management (appointments available via GP or consultant referral only). They offer one to one outpatient appointments with trained support workers who give advice in managing the illness. They provide some information about services for people with ME and chronic fatigue syndrome.

National Tremor Foundation

National Tremor Foundation logo

www.tremor.org.uk

The National Tremor Foundation provides patients and their families with information on essential tremor. They maintain a world-wide referral network of specialists experienced in the clinical care of essential tremor patients. They assist in the formation of local independent support groups for patients

National Voices

National Voices logo

www.nationalvoices.org.uk

National Voices is an umbrella organisation, set up to ensure that the needs and preferences of those affected by government health and social care policy are given full weight in its development and implementation. It brings together a broad and diverse coalition of voluntary sector organisations representing patients, service users and carers, and ensures that their voices are taken into account from the earliest possible stages of policy development by providing an effective channel of communication with policy makers.

Neuromyelitis Optica UK

www.nmo-ukresearchfoundation.org

Neuromyelitis Optica exists to raise awareness of neuromyelitis optica (NMO) among the medical profession and the public at large; to support people who have the condition and to raise funds for research. They are a new, but growing, charity and as such one of their key aim is to ensure that everyone diagnosed with NMO is aware of their existence.

The Nerve Centre Kirklees

www.thenervecentrekirklees.org.uk

The Nerve Centre supports people living with a neurological condition and those who care for them. They also actively campaign locally and nationally for improved services and awareness, forming part of the Neurological Alliance.

Pain Concern

Pain Concern logo

www.painconcern.org.uk

Pain Concern provides information and support to people with pain and those who care for them, whether family, friends or healthcare professionals.

Parkinson’s UK

Parkinson's UK logo

www.parkinsons.org.uk

Parkinson’s UK provides practical support, information and advice to people with Parkinson’s and their carers. They fund research to investigate the causes of Parkinson’s, to improve the treatments available and to develop new treatment techniques.

Pernicious Anaemia Society

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www.pernicious-anaemia-society.org

The original aim of the Pernicious Anaemia Society was simply to provide an easy to understand explanation of Pernicious Anaemia to newly diagnosed patients – at the time there was no such information available. It quickly became obvious that there were serious issues with the way in which B12 Deficiency in general, and Pernicious Anaemia in particular, is diagnosed and treated.

The society provides information help and support not only to sufferers of Pernicious Anaemia but also their families and friends.

PJ Care

www.pjcare.co.uk

PJ Care is independent provider of specialist nursing care and neuro-rehabilitation for people with physical illnesses, restricted mobility and challenging behaviours as a result of organic, degenerative or neurological disorders.

Polio Survivors Network

Polio survivors network logo

www.poliosurvivorsnetwork.org.uk

The Polio Survivors Network is a post-polio information service run by polio survivors for medical professionals and polio survivors, their families and friends. Their extensive website contains an online library of 100+ catalogued medical articles and other information.

Primary-Care Neurology Society

www.p-cns.org.uk

The Primary Care Neurology Society is a network of like minded healthcare professionals, organisations and partnering companies who all share an interest in primary care neurology.

PSP Association

The PSP Association

www.pspeur.org

The PSP Association promotes research worldwide into the cause, an effective treatment and eventual cure for progressive supranuclear alsy. They provide information and support to afflicted families across Europe. They raise awareness of the disease, particularly amongst relevant health professionals and amongst the general public at large, mainly in the UK.

Queen Elizabeth Foundation Neuro Rehabilitation Services

www.qef.org.uk/our-services/neuro-rehabilitation-services

The Queen Elizabeth Foundation Neuro Rehabilitation Services provide acquired brain injury services through their rehabilitation centre in Surrey, offering assessment, intensive neuro rehabilitation and education.

Restless Leg Syndrome UK (RSL-UK)

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rls-uk.org

RLS-UK, a registered charity in England and Wales, is committed to raising awareness of RLS; to providing information and support to those living with RLS; and to improving the quality of RLS care in the UK.

Ring 20 Chromosome Foundation

www.ring20.org

The Ring Chromosome 20 Foundation was created to provide information, resources and assistance to families affected by ring chromosome 20 syndrome. Their hope is to share as much information as possible so that doctors and families can better understand the syndrome and its treatment.

Royal Hospital for Neuro-disability

Royal Hospital for Neuro-disability logo

www.rhn.org.uk

The Royal Hospital for Neuro-disability is a national medical charity helping people who are affected by an acquired brain injury. The RHN offers an extensive range of rehabilitation and long-term care services, including specialist therapies and state of the art technology – giving people they people living with neuro-disability the best possible quality of life, whatever their level of ability. Specialists all work under one roof, based in Putney, London. The RHN’s academic art, the Institute of Neuropalliative Rehabilitation researches and informs clinical development, and provided specialist course, lectures and seminars.

Scope

www.scope.org.uk

Scope is the disability organisation in England and Wales whose focus is people with cerebral palsy. Their aim is that disabled people achieve equality: a society in which they are as valued and have the same human and civil rights as everyone else.

The Shane Project

www.shaneproject.org.uk

The Shane Project exists to raise awareness, provide support, information, advocacy and empowerment to people with multiple sclerosis, their carers and relatives, particularly in the African Caribbean and minority ethnic communities.

Shine

www.shinecharity.org.uk

Shine provides services to individuals with spina bifida and/or hydrocephalus, their families and carers; including support, advocacy and advice. They provide information on all aspects of the disabilities. They also support research into medical, scientific and social aspects. The work to improve statutory services for those affected by these disabilities.

Speakability

www.speakability.org.uk

Speakability supports people with aphasia, and those that care for them, through its information service and network of self-help groups. They campaign to increase awareness of aphasia as a long-term condition. They provide training to paid and unpaid carers on communication skills.

Stoke Mandeville Spinal Research

SMSR logo

www.lifeafterparalysis.com

Stoke Mandeville Spinal Research brings together the spinally injured, carers, healthcare professionals and researchers to: alleviate medical complications, like bladder infections and pressure sores; explore and promote the benefits of assistive technology; and help people to regain their confidence socially and return to work

The Stroke Association

www.stroke.org.uk

The Stroke Association aims to help all in England and Wales affected by stroke. They develop and provide services, support research, disseminate knowledge, provide training and education to improve standards of care.

SUDEP Action

SUDEP

www.sudep.org

There are at least three epilepsy-related deaths a day in the UK. The majority are sudden unexpected deaths in epilepsy (SUDEP) which is not fully understood. SUDEP Action is a reporting and support centre for all epilepsy deaths and works with the bereved and professionals to make change. Deaths can be reported confidentially via the epilepsy deaths register on their website.

Sue Ryder

Sue Ryder Care logo

www.sueryder.org

Sue Ryder provides specialist care and support to people with a neurological condition. They aim to be the first choice in their chosen field of activity.

Tourettes Action

Tourettes Action logo

www.tourettes-action.org.uk

Tourettes Action provides free information and support for everyone affected by tourette syndrome, promotes research into better treatments and seeks to change society’s view so that all children and adults with tourette syndrome receive the practical support and social acceptance they need to lead their lives to the full.

Transverse Myelitis Society

Transverse Myelitis Society logo

www.myelitis.org.uk

The Transverse Myelitis Society provides information and support for transverse myelitis sufferers, families and carers.

Tuberous Sclerosis Association

Tuberous Sclerosis Association logo

www.tuberous-sclerosis.org

The Tuberous Sclerosis Association provides support for individuals affected by tuberous sclerosis complex and those caring for them; education of professionals, sufferers and the general public. They also encourage and sponsor research.

Trigeminal Neuralgia Association UK

Trigeminal Neuralgia Association UK logo

www.tna.org.uk

Trigeminal Neuralgia Association UK provides information, support and encouragement to trigeminal neuralgia patients, their families and friends; raises awareness of the condition among medical professionals and members of the public; promotes research and serves as an information centre for current treatments and details of any advances being made in the treatment of trigeminal neuralgia.

UK Acquired Brain Injury Forum

UK Acquired Brain Injury Forum (UKABIF) logo

www.ukabif.org.uk

The United Kingdom Acquired Brain Injury Forum is a not-for-profit coalition of organisations and individuals that seek to promote understanding of all aspects of acquired brain injury and provide information and expert input to policy makers and others to promote the interests of brain injured people and their families. .

Young Epilepsy

www.ncype.org.uk

Young Epilepsy exists to improve the lives of children and young people with epilepsy to enable them to fulfill their potential and ensure they have the best quality of life.


A-Z of neurological conditions

The Brain and Spine Foundation also has a concise list of neurological conditions. These are listed alphabetically, with links to helpful organisations and websites.

Visit: www.brainandspine.org.uk

If you know of any organisations that you think should be displayed on this page, please email your suggestion to us

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