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A to Z of useful websites
Below is a list of other organisations and websites which may be useful. Conditions are listed alphabetically. The Brain and Spine Foundation is not responsible for the content of the following links, if there is an organisation which you would like added please email details to the Helpline team at helpline@brainandspine.org.uk who will review content and suitability of the site before it is added.
Choose category:
- Acoustic Neuroma
- ADEM (Acute Disseminated Encephalomyelitis)
- Alzheimer’s Disease
- Aphasia
- Arachnoid Cyst
- Arnold Chiari Malformation (ACM)
- Arteriovenous Malformation
- Ataxia
- Back pain
- Bereavement
- Brain injury
- Brain tumour
- Carers
- Cavernoma
- Cerebral palsy
- Charcot-Marie-Tooth Disease
- Chemotherapy
- Children
- Chronic Fatigue Syndrome
- Complementary therapies
- Continence
- Counselling and psychotherapy
- Creutzfeldt-Jacob Disease (CJD)
- Dementia
- Devic's Disease
- Dizziness
- Dystonia
- Dystrophy
- Encephalitis
- Epilepsy
- Eyes
- Face pain
- Generally useful websites
- Genetics
- Guillain-Barre
- Headache
- Hearing problems and tinnitus
- Hemiplegia
- Huntington's disease
- Hydrocephalus
- Idiopathic Intracranial Hypertension
- Kyphosis
- Labyrinthitis
- Low grade glioma
- Meniere's Disease
- Meningioma
- Meningitis
- Mental Health
- Migraine
- Motor Neurone Disease
- Multiple Sclerosis
- Muscular Dystrophy
- Myalgic Encephalomyelitis (ME)
- Myasthenia Gravis
- Narcolepsy
- Neck pain
- Neurofibromatosis
- Neuromyelitis optica
- Neuropathy
- Osteoporosis
- Pain
- Paralysis
- Parkinson's disease
- Persistent vegetative state
- Pituitary disorders/tumours
- Polio
- Progressive Supranuclear Palsy (PSP)
- Radiosurgery
- Radiotherapy
- Raynaud’s Syndrome
- Scoliosis
- Speech problems
- Spina bifida
- Spinal injury
- Spinal Muscular Atrophy
- Spinal surgery
- Spinal tumours
- Stroke
- Subarachnoid Haemorrhage
- Syringomyelia
- Transient Ischaemic Attack (TIA)
- Transverse myelitis
- Trigeminal neuralgia
- Undiagnosed conditions
- Vascular malformations
- Vertigo
- Wilson’s Disease
ADEM (Acute Disseminated Encephalomyelitis)
-
About ADEM
Page from the Transverse Myelitis Association website
Aphasia
- Speakability
-
Connect
Connect is a charity for people living with aphasia (communication disability usually following stroke). Connect works to promote effective services, new opportunities and a better quality of life for people living with aphasia. - Talking Point
Arachnoid Cyst
- Arachnoid Cyst Awareness
-
Arachnoid Cyst Friends
Yahoo group supporting people affected by Arachnoid Cyst (you need to join the group in order to read or post messages)
Brain injury
-
Brain injury resources from the Brain and Spine Foundation
A page containing all the resources produced by the Brain and Spine Foundation on brain injury, head injury and concussion. -
All About ABI (Acquired Brain Injury)
Website for children, created by the Brain and Spine Foundation -
BIG (Brain Injury Group)
A support group for people who have loved ones with devastating brain injuries. - Brain injury rehabilitation trust (BIRT)
-
Brainwave
For children with acquired brain injury. - Child Brain Injury Trust
- Headway - The Brain Injury Association
- Momentum
- Sudden Trauma Information Service Helpline
- UK Acquired Brain Injury Forum
- Mersey Care NHS Trust Brain Injury Rehabilitation Centre
Brain tumour
-
Brain tumour: information resources
The place to start for information on brain tumour. Includes the Brain and Spine Foundation Brain Tumour booklet, plus Headstrong resources for children and patient stories. - Andrea's Gift
-
Astro Fund
Funds low-grade brain tumour research and provides information for patients. - brainstrust
- Brain Tumour Action
-
Brain Tumour Hub
A searchable database of the brain tumour support and brain tumour advice services available to you nationally. Provided by brainstrust. - Brain Tumour Research
- Brain Tumour UK
- CancerHelp UK
-
CLIC Sargent
For children and young people and their families -
Friends of O.S.C.A.R.
A national charity which supports children diagnosed with a brain or spinal tumour, together with their families. -
HeadSmart
A project that aims to enhance the awareness of symptoms of brain tumours in children and young people. - Macmillan Cancer Support
- Marie Curie Cancer Care
- Samantha Dickinson Brain Tumour Trust
Chemotherapy
- CancerHelp UK
-
CLIC Sargent
For children and young people and their families - Macmillan Cancer Support
Children
- Contact a Family
- Children First for Health
-
Reach Out
A website with resources for disabled young people and their families. West Sussex based but with some information relevant to all.
Devic's Disease
- Neuromyelitis Optica UK Specialist Services
-
About Devic's Disease
Page from the Transverse Myelitis Association website
Dizziness
- Dizziness and Balance
- Labrynthitis UK
- Meniere’s Society
- British Tinnitus Association
- Balance assessments, Royal Surrey County Hospital
-
MdDS Balance Disorder Foundation
US website designed for those suffering from MdDS (Mal de Debarquement Syndrome) and the health care professionals who treat them.
Dystonia
-
The Dystonia Society
The Dystonia Society provides support and information for anybody living with dystonia, a neurological movement disorder that affects at least 70,000 people in the UK
Dystrophy
-
Duchenne Family Support Group
Helpline: 0870 241 1857 -
Muscular Dystrophy Campaign
Helpline: 020 7720 8055
Epilepsy
-
Epilepsy Action
Helpline: 0808 800 5050 -
Epilepsy Scotland
Helpline: 0808 800 2200 -
National Society for Epilepsy
Helpline: 01494 601400
Eyes
-
Moorfields Eye Hospital
Helpline: 0207 566 2345 -
Royal National Institute for the Blind (RNIB)
Helpline: 0845 766 9999
Generally useful websites
- European Dana Alliance for the Brain
- Patients Association
- Department of Health
- Patient UK
- Crossroads – caring for carers
- Neurological Alliance
- NHS Direct
- National Institute of Neurological Disorders and Stroke
- Brain and Spinal Injuries Charity (BASIC)
- DiseasesConditions.com
- Regional Driving Assessment Centre
- Healthtalkonline
-
Housebound Forums
A forum for people who find themselves housebound at times due to a specific condition.
Headache
-
OUCH UK (Cluster headache support group)
Tel: 01646 651979 -
The Migraine Trust
Tel: 020 7436 1336 -
Migraine Action
Tel: 0116 275 8317 - Headache Expert
Hearing problems and tinnitus
-
British Tinnitus Association
Support and information on tinnitus. -
RNID Tinnitus Helpline
Telephone: 0808 808 6666 or Textphone: 0808 808 0007
Hemiplegia
-
www.hemihelp.org.uk
Hemihelp is a UK based charity for children and young people with hemiplegia and their families.
Low grade glioma
-
Astro Fund
A charity offering information, inspiration and hope to those affected by low-grade brain tumours and support via an online support group.
Meningitis
-
Meningitis Research Foundation
Helpline: 0808 800 3344 -
Meningitis Trust
Helpline: 0800 028 18 28
Multiple Sclerosis
-
Multiple Sclerosis Society
Helpline 0808 800 8000 -
Multiple Sclerosis Trust
Helpline: 0146 247 6700
Neuromyelitis optica
- Neuromyelitis Optica UK Specialist Services
-
About Neuromyelitis Optica
Page from the Transverse Myelitis Association website
Pain
- Pain Concern
- The British Pain Society
- Pain Clinic.org
-
Action on Pain
Painline: 0845 6031593 (Local rate)
Radiosurgery
- London Gamma Knife Centre
- National Centre for Stereotactic Radiosurgery, Sheffield
- The Cromwell Hospital Gamma Knife Centre
Radiotherapy
- Cancer Research UK
-
CLIC Sargent
For children and young people and their families - Macmillan Cancer Support
Spina bifida
- Shine (formerly Association of Spina Bifida and Hydrocephalus (ASBAH))
- Spina Bifida Association of America
Spinal injury
- ASIA - American Spinal Injury Association
-
Aspire
Supporting people with spinal injuries. - Backup Trust
- MASCIP - Multidisciplinary Association of Spinal Cord Injury Professionals
- Spinal Injuries Association
Spinal tumours
- Spinal Cord Tumour Forum
-
Friends of O.S.C.A.R.
A national charity which supports children diagnosed with a brain or spinal tumour, together with their families.
Stroke
-
Stroke resources from the Brain and Spine Foundation
A page containing all the resources produced by the Brain and Spine Foundation on stroke, TIA and spinal strokes. - The Stroke Association
- Different Strokes
- Heart and Stroke Information Point
-
Stroke 4 Carers
A website for stroke carers, families and friends of anyone affected by stroke illness.
Subarachnoid Haemorrhage
-
Subarachnoid haemorrhage resources from the Brain and Spine Foundation
A page containing all the resources produced by the Brain and Spine Foundation on subarachnoid haemorrhage. As well as a comprehensive booklet it contains related publications, patient perspectives and a discussion forum. -
Subarachnoid haemorrhage information
Information provided by Medical and Nursing teams from the Wessex and Greater Manchester Neuroscience Centres - Brain Help
- The Brain Aneurysm Foundation (USA)
- Brain aneurysm resources (USA)
-
Aneurysm Support (USA)
This US website has information and support on aneurysms, as well as patient stories and a discussion forum.
Transient Ischaemic Attack (TIA)
-
TIA resources from the Brain and Spine Foundation
A page containing all the resources produced by the Brain and Spine Foundation on stroke and TIA, including a downloadable TIA fact sheet. -
The Stroke Association
Helpline 0303 3033 100 - Different Strokes
- Circulation Foundation
Transverse myelitis
- Transverse Myelitis Association (America)
- Transverse Myelitis Society (UK contact)
-
Transverse Myelitis resources from the Brain and Spine Foundation
This page is the place to start for information on TM. Includes a comprehensive booklet, related publications, patient perspectives and a discussion forum.
Undiagnosed conditions
-
Brain and Spine Foundation resources on undiagnosed conditions
This page contains useful resources on undiagnosed neurological symptoms and conditions, including an information sheet, related publications, patient perspectives and a discussion forum.
