Conditions and Diseases Neurological Disorders in the Best of the Web UK Directory

Conditions and Diseases Neurological Disorders

AMNET - The Acoustic Neuroma and Meningioma Network

A network of former and present patients, the clinical staff at Addenbrookes (a centre of excellence for the treatment of these brain tumours), and other interested parties.

The Ann Conroy Trust (ACT)

Provides information and support to sufferers from Syringomyelia and associated disorders, and funds research into the condition; includes information, newsletter, details of services, and contacts.

Arachnoiditis.co.uk

A sufferer from the condition provides information, hints and tips, and links to help others. https://www.facebook.com/groups/185636404960032/

A-T Society

A national charity supporting research into Ataxia-Telangiectasia, and supporting families affected by A-T through two specialist clinics. Includes a guide to the condition and to living with it, information for professionals, news and contacts.

Ataxia UK

Supports research into the causes of ataxia and development of treatments. Also provides services for patients, families, and carers; includes news, events, and information resources. https://www.facebook.com/ataxiauk ataxiauk

BASIC - Brain and Spinal Injury Centre

Provides counselling, information and support services for patients and their families following a brain or spinal injury. Includes details of their national network of centres, services, and information resources.

Black Country Neurological Alliance

Umbrella organisation that is led by people who are affected both directly and indirectly by a neurological condition.

The Brain and Spine Foundation

Offers research, education and information programmes for people affected by brain and spine disorders. Includes helpline contacts.

British Acoustic Neuroma Association

Offering support and advice to those suffering from this kind of brain tumour, and their families. With articles, membership area and information about the condition.

British Trust for The Myelin Project

UK branch of an international charity which funds research into demyelinating diseases, including Multiple Sclerosis (MS) and Leukodystrophies. Includes information sources, with a guide to how to help.

The Children’s Mitochondrial Disease Network

Formed to support parents of children suffering from Mitochondrial and associated disorders, and professionals working with them; includes background on the condition, links to further resources, and information about membership and fundraising.

Children's Brain Tumour Research Centre

Examines the research work into childhood brain tumours which goes on at this centre, and offers information about making a donation.

CMT United Kingdom

A charity supporting those affected by Charcot-Marie-Tooth Disease. Includes an overview of the condition, how to get help plus news. https://www.facebook.com/CMTUK CMTUnitedKdom

Corpal

Non profit support group caring for those who have ACC or Aicardi Syndrome. Includes newsletter and information about the condition.

Cure Parkinsons

Charity with the specific aim of raising money to fund and facilitate research into finding a cure for Parkinson’s.

Cyclical Vomiting Syndrome Association UK

Presents information on the symptoms, diagnosis and treatment of cyclical vomiting syndrome, plus personal stories and association membership information.

Dancing Eye Syndrome Support Trust

Aims to raise funds and offer support to families of children with this syndrome, the full name of which is opsoclonus myoclonus syndrome, and which is characterised by jerky eye and limb movements.

David Lewis Centre

Provider of a range of medical, educational, residential and assessment services for people with complex epilepsy and other neurological conditions, including learning disability and challenging behaviour.

Dysautonomia Society of Great Britain (DSGB)

British chapter of the Dysautonomia Foundation of the USA; provides information and support to sufferers of this genetic condition that causes dysfunction of the autonomic and sensory nervous systems.

Erb's Palsy Group

Offers advice and information on the injury Erb's Palsy/Obstetrical Brachial Plexus Paralysis, which is mainly caused by birth trauma. Includes event listings and information on their young achiever awards.

Fibromyalgia Association UK

Aims to raise awareness of the condition and provide support to suffers; includes information and advice, and a nationwide listing of local groups.

Guillain-Barre & Associated Inflammatory Neuropathies

Offers information and support for those affected by Guillain Barre and associated inflammatory neuropathies.

Guillain-Barré Syndrome Support Group

Offers support and information to those affected by Guillain-Barré syndrome, CIDP and other dysimmune neuropathies in Britain and Ireland; includes resources, a forum, and a section for health professionals.

Headway

Charity that works to improve life after brain injury. Provides information, support and services to people affected by brain injury, their family and carers.

HemiHelp

Provides information resources about hemiplegia and hemiparesis (particularly related to children and young people), a FAQ, details of their services, and contacts, with sections dedicated to young people themselves and professionals. https://www.facebook.com/groups/5512952137/ HemiHelp/

Huntington's Disease Association

Offers HDA downloads and fact sheets plus the latest research details. Includes fundraising events and membership.

Irlen Syndrome

Describes the symptoms and treatment options available for this perception disorder.

The Jennifer Trust for Spinal Muscular Atrophy

A national charity supporting people affected by SMA. Includes research and treatment details plus helplines.

Magnopulse International Ltd

Provides information and resources to help circulation problems in a range of neurological disorders including restless leg syndrome (RLS), cramp, gout and carpal tunnel. Site offers articles, ailment details and how to get relief.

Moebius Research Trust

Dedicated to raising awareness of, and supporting research into the rare congenital neurological disorder; includes information, events and fundraising, and contacts.

Multiple System Atrophy Trust

Provides an information bank for people affected by this degenerative neurological disorder, their families and carers, and for professionals; also supports research into the condition.

Myotonic Dystrophy Support Group

Offering information and support to those dealing with this chronic, slowly progressing, highly variable inherited multisystemic disease.

MyParkinsonsTeam

Social network and online support group for those living with Parkinson's. https://www.facebook.com/MyParkinsonsTeam/

National Tremor Foundation

Aims to offer support to all those living with tremors, irrespective of age. Includes publications list and information on fundraising.

Neurofibromatosis Association

Contains background information on neurofibromatosis and offers details of their network of support for those with this genetic condition. Also provides downloadable information sheets and information on special events.

Neuropathy Trust

Provides information and support to people affected by Peripheral Neuropathy (PN) and Neuropathic Pain (NeP); provides a library of resources, forum, and an "ask-the-expert" feature.

NeuroSupport

Supporting people with a wide range of neurological disorders. Includes newsletters, details of the various services provided, information on how to volunteer and an A-Z of neurological conditions.

Northern Neurological Alliance

Works with a range of brain and spine charities, networks and forums to campaign locally and nationally for better services for people with neurological conditions.

NorthStar

The UK National Neuromuscular Database has been developed to facilitate research, audit and standardised clinical assessment of patients with neuromuscular disorders in the UK and to lead and contribute to national and international initiatives in the field of neuromuscular conditions.

One Ear to the Ground

Aims to provide detailed self help information for acoustic neuroma patients.

Organisation for Anti Convulsant Syndromes

Supports families of babies born with a variety of problems known as Fetal Anti-Convulsant Syndrome, believed to be caused during the first trimester of pregnancy, when a mother to be takes anti convulsant drugs to help control seizures.

OUCH UK

Organisation for the Understanding of Cluster Headaches; offers background information on cluster headaches, plus news, forum and details of the organisation's helpline.

Parkinson's UK

Offers advice and support for people with Parkinson's, their carers and families, through a network of local groups; also supports research into the condition. Includes resources and news, and a section for professionals.

Rett UK

Provides support and information about this rare neurological disorder affecting mainly female children for their families and carers, and for professionals.

Royal Hospital for Neuro-disability

Putney based hospital caring for patients with profound neurodisabilities; includes information for patients and carers, and details of research and how to support the hospital. http://www.facebook.com/RHNnews rhnuk

Samantha Dickinson Brain Tumour Trust

Leading brain tumour charity in the UK, providing country wide support to patients and families and funding a wide variety of research projects.

Scottish Spina Bifida Association

Provides information, support, projects, and advice on all aspects of spina bifida and hydrocephalus; with contact details.

Shine

Provides information, advice and support, and specialist services for individuals affected by Spina Bifida and Hydrocephalus and their families.

South West Wales Neurological Alliance

A collaborative alliance consisting of people with neurological conditions, carers and representatives of neurological charities and support groups.

Sturge-Weber Foundation UK

A voluntary support group for families and adult sufferers affected by Sturge-Weber syndrome; provides information and resources, personal accounts, and details of a specialist clinic in Great Ormond Street Hospital.

Tees Valley, Durham & North Yorkshire Neurological Alliance

Signposting and campaigning charity dedicated to improving the lives of people living with a neurological condition.

Trigeminal Neuralgia Association

Provides leaflets and advice for patients with this facial pain disorder. Also contains a forum.

UK Synaesthesia Association

Formed to bring scientists, researchers, students and synaesthetes together and provide information regarding the condition. Provides a library of resources and details of membership and activities.

Yorkshire Brain Research Centre

Part of the Leeds Teaching Hospitals Charitable Foundation. Working for better diagnosis, better treatment and better outcomes for patients with brain conditions. yorkshirebrain

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