| Organisation |
Content |
| Compiled resources
of information for patients with neurological conditions |
| British Association
for the Study of Headache |
'To relieve those affected by the burdens of headache'
Web: www.bash.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. |
| 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. |
| 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. |
Information for
patients with particular neurological conditions
(alphabetical list of conditions) |
| 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 |
| 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.ukan.co.uk/bana/ |
| 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 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 |
| Cerebral palsy |
Scope is a disability organisation in England
and Wales whose focus is people with cerebral palsy.
Web: www.scope.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 |
| 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 |
| National Creutzfeldt-Jakob Disease
Surveillance Unit CJD |
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 |
| 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 |
| Meningitis |
The Meningitis Trust 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.meningitis-trust.org
|
| 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 |
| 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 |
| 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 |
| 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 |
| 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 Sarah Matheson Trust (SMT) is the recognised
United Kingdom support and information service for
people with Multiple System Atrophy (MSA), their
families and carers.
Web: www.msaweb.co.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 |
| 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.mgauk.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 |
| 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 |
| 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.org.uk/prion |
| 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
|
| 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 |
Tourette Syndrome (UK) Association is a
registered charity dedicated to providing support,
educating, informing and campaigning, and promoting
medical research on behalf of all those affected
by TS.
Web: www.tsa.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 |
