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Patient and Carer Information

Organisation Content
Acoustic Neuroma

British Acoustic Neuroma Association is a patient organised and administered information and mutual aid group, which exists for mutual support, information exchange and mutual listening.
Web: www.bana-uk.com

 

 

Alzheimer's disease

The Alzheimer's Society is the UK's leading care and research charity for people with any form of dementia and their carers.
Web: www.alzheimers.org.uk

Ataxia

Ataxia UK helps people affected by ataxia with research, information, contacts, a helpline, and grants to members in need.
Web: www.ataxia.org.uk

Ataxia telangiectasia

The A-T Society is working to improve the quality of life for children and adults with Ataxia-Telangiectasia ("A-T") and their families through research, support and awareness.
Web: www.atsociety.org.uk

Brain & spinal injuries

Since 1986 the Brain and Spinal Injury Charity has been raising funding for research into the brain and more recently they have extended their services to include support and information for those recovering from these conditions.
Web: www.basiccharity.org.uk

Brain and Spine Foundation

The Brain and Spine Foundation was set up in 1992 to develop research, education and information programmes aimed at improving the prevention, treatment and care of people affected by disorders of the brain and spine and to stimulate the greater allocation of resources across all neurological disorders.

http://www.brainandspine.org.uk/

Brain injury

The UKABIF is a not-for-profit coalition of organisations and individuals that seeks to promote understanding of all aspects of acquired brain injury and to provide information and expert input to policy makers and others to promote the interests of brain injured people and their families.
Web: www.ukabif.org.uk

British Association for the Study of Headache

'To relieve those affected by the burdens of headache'
Web: www.bash.org.uk

Cavernoma Alliance

Cavernoma Alliance UK is a charity created by people affected by Cavernoma otherwise known as cerebral cavernous malformations or cavernous angioma.  Our mission is to improve the quality of life for those affected by cavernomas through education, support and promotion of research. 

Web:  www.cavernoma.org.uk

 

Cerebral palsy

Scope is a disability organisation in England and Wales whose focus is people with cerebral palsy.
Web: www.scope.org.uk

Charcot-Marie-Tooth

Charcot-Marie-Tooth UK works to support those who are affected by Charcot-Marie-Tooth Disease, also known as Hereditary Motor and Sensory Neuropathy or Peroneal Muscular Atrophy
Web: www.cmt.org.uk

Child brain Injuries

Child Brain Injury Trust aims to improve the quality of life for all children and young people who have an acquired brain injury and to enable them to achieve their full potential.
Web: www.cbituk.org

Cluster Headache

Ouch (UK) provides support for sufferers of cluster headaches and their families, and to increase public awareness of the condition.
Web: www.clusterheadaches.org.uk

Dementia

The mission of for dementia is to improve the quality of life for people affected by dementia.
Web: www.fordementia.org.uk

Dysphasia

Speakability is the national charity that supports people living with aphasia and their carers through its information service, national network of groups and activities programme; influences individuals, organisations and statutory bodies in order to improve services for people living with aphasia; and raises funds to support these aims.
Web: www.speakability.org.uk

Dystonia

The dystonia society is a medical charity, established in 1983, working for the benefit of all who suffer from dystonia and those who care for them.
Web: www.dystonia.org.uk/dystoniasocietyh.html

Encephalitis

The Encephalitis Society provides information and support to improve the quality of life of all people affected directly and indirectly by encephalitis.
Web: www.encephalitis.info

 

Epilepsy

The National Society for Epilepsy is striving for a world without epilepsy. In the meantime we will seek to enhance the Quality of Life of people affected by epilepsy by promoting research, education and public awareness, and by providing specialist medical care and support services.
Web: www.epilepsynse.org.uk

Epilepsy

Epilepsy Action provides information about coping with epilepsy and seizures including help and advice through the use of email and Freephone telephone helplines.
Web: www.epilepsy.org.uk

Guillain-Barré Syndrome

The GBS Support Group provide information and support to those suffering from Guillain-Barré syndrome and related neuropathies including CIDP and Miller Fisher syndrome.
Web: www.gbs.org.uk

Head injury

Head Injury Re-Education is an organisation dedicated to helping children, young people and adults who have acquired brain injury and whose lives has been affected as a result.
Web: www.headinjuryreeducation.org.uk

Head injury

The aim of Headway is to promote understanding of all aspects of brain injury; and to provide information, support and services to people with a brain injury, their family and carers.
Web: www.headway.org.uk

Hemiparesis

Hemihelp aims to offer information and support to families where there is a child with hemiplegia and raise awareness about the condition amongst both the professionals who work with our children and the public.
Web: www.hemihelp.org.uk

Huntington's disease

The Huntington's Disease Association exists to support people affected by the disease and to provided information and advice to professionals whose task it is to support Huntington's disease families.
Web: www.hda.org.uk

KLS Support UK

 KLS Support UK is a small charity which was set up to provide support to families affected  by Kleine-Levin Syndrome (KLS),  raise awareness of this rare neurological disorder and support research.  www.kls-support.org.uk

Lincolnshire Post Polio Network

The Lincolnshire Post-Polio Web Site began life in 1997 and over the years has expanded to become a major resource of polio and post-polio information. The site currently comprises over 450 documents, many of which are substantial articles in their own right. A project to restructure the web site is ongoing. The project covers improving accessibility and navigation, updating content as well as the provision of new facilities. The current production web site will continue to be available for the duration of this project. 
http://www.lincolnshirepostpolio.org.uk/

Meningitis

Meningitis Now produces information to raise awareness of the disease, funds research into vaccines and treatment, and offers a wide range of support for people affected by meningitis and meningococcal septicaemia.
Web: www.meningitisnow.org 

Migraine

The Migraine Action Association (formerly the British Migraine Association) aims to bridge the gap between the migraine sufferer and the medical world by providing information on all aspects of the condition and its management.
Web: www.migraine.org.uk

Migraine

The Migraine Trust is committed to supporting sufferers and their families by funding and promoting research, improving diagnosis and treatment, providing information and advice, and raising awareness of migraine as a significant public health problem.
Web: www.migrainetrust.org

Motor neurone disease

Scottish Motor Neurone Disease Assoication is the only charity exclusively providing support for people affected by MND in Scotland.
Web: www.scotmnd.org.uk

Motor neurone disease

The Motor Neurone Disease Assoication is the only national organisation in England, Wales and Northern Ireland dedicated to the support of people with MND and those who care for them.
Web: www.mndassociation.org

Multiple sclerosis

The MS Society is the main source of reliable information about MS and the leading UK funder of MS research while also providing a strong voice on issues related to MS. Its nation-wide network of branches provides information and support to everyone affected by MS.
Web: www.mssociety.org.uk

Multiple sclerosis

The Multiple Sclerosis Society Scotland is Scotland's largest charity for people affected by multiple sclerosis. They are part of the MS Society of Great Britain and Northern Ireland.
Web: www.mssocietyscotland.org.uk

Multiple sclerosis

The MS Trust is a charity for people with multiple sclerosis, their families and friends, and for all health professionals who work with them. Information offered about MS, education for nurses and other health professionals and fund applied research.
Web: www.mstrust.org.uk

Multiple system atrophy

The Multiple System Atrophy Trust is the recognised United Kingdom support and information service for people with Multiple System Atrophy (MSA), their families and carers.
Web: http://www.msatrust.org.uk/

Muscular dystrophy

The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders.
Web: www.muscular-dystrophy.org

Further Information onFree Publications

Myasthenia gravis

The Myasthenia Gravis Association (MGA) has as its objective the promotion of the welfare of sufferers from Mysathenia Gravis in the United Kingdom and the Republic of Ireland.
Web:www.mga-charity.org

Narcolepsy

Narcolepsy Association UK (UKAN) is an association of narcoleptics, their relatives and others for the benefit, relief and aid of persons suffering from narcolepsy.
Web: www.narcolepsy.org.uk

National Creutzfeldt-Jakob Disease Surveillance Un

The incidence of Creutzfeldt-Jakob disease (CJD) is monitored in the UK by the CJD Surveillance Unit based at the Western General Hospital in Edinburgh, Scotland. The unit brings together a team of clinical neurologists, neuropathologists and scientists specialising in the investigation of this disease.
Web: www.cjd.ed.ac.uk

Neurofibromatosis

The Neurofibromatosis Association aims to fight neurofibromatosis by acting as a mutual support group, linking those affected to each other and with the medical profession, providing information, and raising funds to support research.
Web: www.nfa-uk.org.uk

Neurological Alliance

The Neurological Alliance is a collaborative forum of a wide range of neurological charities. By working together members of the Alliance pursue the highest standards of service and care for the estimated three million people in the UK affected by a neurological condition, their families and carers.

www.neural.org.uk/directory-of-organisations/regional-organisations

 

Pain

Pain Concern offers information and support for pain sufferers, with free Factsheets and leaflets to help manage pain, a quarterly magazine, updates on the latest developments, and a listening-ear helpline.
Web: www.painconcern.org.uk

Parkinson's disease

The aim of the Parkinson's Disease Society is the conquest of Parkinson's disease and the alleviation of the distress it causes through research, education, welfare and communication.
Web: www.parkinsons.org.uk

Polio

The British Polio Fellowship (BPF) is a registered charity that provides information and advice about rights, housing issues, equipment, self-management courses, and the late effects of polio/post polio syndrome.
Web: www.britishpolio.org

Prion disease

Prion Clinic at St Mary's provides factsheets about all forms of Prion Disease, information about the clinic, and sources of support.
Web:www.st-marys.nhs.uk

 

 

 

 

 

 

 

Progressive Supranuclear Palsy

The PSP Association was set up in 1994 by a family afflicted with PSP to provide information and support to sufferers and their carers across Europe, to promote and sponsor research worldwide and to engender awareness of this disease and the Association, mainly within the UK.
Web: www.pspeur.org

Rett syndrome

The Rett Syndrome Association UK is a national organisation giving help, advice and support to parents, carers, siblings and professionals - in fact anybody - involved with a child or adult who has Rett syndrome.
Web: www.rettsyndrome.org.uk

Rockefeller Medical Library

A searchable database of neurological charities, societies, and support groups. Although still under construction, information is actively being added to the patient support database by library staff /www.ion.ucl.ac.uk/library

 

Spasticity

Moving Forward helps people with spasticity by publishing information that can lead to a better understanding of this condition, improved treatment, and quality of life. The Association also supports health professionals that want to learn more about the most up-to-date and effective management techniques and treatment.
Web: www.movingforward.org.uk

Spina bifida & hydrocephalus

ASBAH aims to improve services for people with spina bifida and/or hydrocephalus, to work with them to extend their choices, and maximise opportunities for independence and achievement.
Web: www.asbah.org

Stroke

The Stroke Association provides support for people who have had strokes, their families and carers. They campaign, educate and inform to increase knowledge of stroke at all levels of society.
Web: www.stroke.org.uk

Stroke

Different Strokes is charity set up by younger stroke survivors for younger stroke survivors.
Web: www.differentstrokes.co.uk

Stroke

CHSS aims to improve the quality of life for people in Scotland affected by chest, heart and stroke illness through medical research, advice and information, and support in the community.
Web: www.chss.org.uk

Syringomyelia Research

Ann's Neurological Trust Society facilitates self help and support for sufferers and carers from syringomyelia and related conditions.
Web: www.ants.org.uk

Tourette syndrome

Tourettes Action is a registered charity dedicated to providing support, educating, informing and campaigning, and promoting medical research on behalf of people who are affected by TS.   Web: www.tourettes-action.org.uk 

Tremor

The National Tremor Foundation aims to offer a support and advice service to people of all ages who have been diagnosed with tremor of all types.
Web: www.tremor.org.uk

Tuberous Sclerosis

The Tuberous Sclerosis Association supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis. All aspects of the Association's work are aimed at improving the quality of life of those who are affected by Tuberous Sclerosis.
Web: www.tuberous-sclerosis.org

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