AFASIC
Support for children and young people who have speech and language difficulties.
2nd Floor, 50 -52 Great Sutton Street, London EC1V ODJ Tel 0845 35555577
www.afasic.org.uk
Brain and Spine Foundation
The Brain and Spine Foundation aims to improve the quality of life for people affected
by all neurological disorders by providing information, support and education programmes
including the Brain and Spine Helpline, which is staffed by neuroscience healthcare
professionals and more than 30 booklets on neurological symptoms and conditions.
7 Winchester House, Cranmer Road, Kennington Park, London, SW9 6EJ Tel: 020 7793
5900 Brain and Spine Helpline 0808 808 1000.
Email:
info@brainandspine.org.uk
Web: www.brainandspine.org.uk
Care Co-ordination Network UK
Work in partnership with disabled children, their families and professionals, to
ensure that all families across the UK have access to high quality care co-ordination.
Social Policy Research Unit, University of York, Heslington, York YO10 5DD, Tel:
01904 321959
Email: info@ccnuk.org.uk
Website: www.ccnuk.org.uk
Carers Direct
Carers Direct is a national information, advice and support service for carers in
England. Available online at www.nhs.uk/carersdirect and as a free, confidential
helpline seven days a week on 0808 802 0202, it provides accurate, relevant information
for carers and those who support them.
Carers UK
Provides an information and advice service for anyone with a caring role., 20/25
Glasshouse Yard, London EC1A 4JT Tel: 0808 808 7777 CarersLine (Wed & Thurs,
10am-12pm and 2-4pm)
E-mail: info@ukcarers.org
Web: www.carersuk.org
Cerebra
Cerebra works to ensure that up-to-date, evidence-based knowledge is available and
applied for the prevention of brain damage and for proven treatments. They also
organise a wide range of training seminars, workshops and projects for parents,
professionals and children themselves. Principality Buildings, 13 Guildhall Square,
Carmarthen, Carmarthenshire, SA31 1PR Tel:0126 724 4200
Email: chris.j@cerebra.org.uk
Website: www.cerebra.org.uk
Contact a Family
Contact a Family provides support and advice to parents whatever the medical condition
of their child. 209-211 City Road, London EC1V 1JN
Helpline 0808 808 3555
E-mail: info@cafamily.org.uk
Website: www.cafamily.org.uk
Child Brain Injury Trust
The Child Brain Injury (CBIT) supports anyone in the United Kingdom affected by
childhood acquired brain injury. They provide information, support and training
to families and professionals. The Radcliffe Infirmary, Woodstock Road, Oxford,
OX2 6HE Tel: 0845 6014939
Email: helpline@childbraininjurytrust.org.uk
Website:www.childbraininjurytrust.org.uk
Crossroads Care
Carers tell us that without the support they receive from Crossroads Care, including
short-term respite care in their own home, they wouldn't be able to carry on with
their caring role.
Find out more about the services offered by
Crossroads Care
Encephalitis Families
www.groups.yahoo.com/group/Nceph2Group/
N-C.E.P.H.- National Childhood Encephalitis Parent's Help Group which is an open
Forum/ Email exchange
Location: United States
Established October 2000
We talk about issues related to children who have survived encephalitis. This is
a parent's email exchange network.
Epilepsy Action
"We want to live in a society where everyone understands epilepsy and where
attitudes are based on fact not fiction." New Anstey House, Gate Way Drive,
Yeadon, LEEDS, LS19 7XY Tel: 0113 210 8800
Email: epilepsy@epilepsy.org.uk
Website: www.epilepsy.org.uk
Headway - the brain injury association
“Our aims are to promote understanding of all aspects of head injury and to
provide information, support and services to people who have suffered a head injury,
their family and carers.” 4 King Edward Court, King Edward Street, Nottingham.
NG1 1EW Tel: 0115 924 0800 Helpline: 0808 800 2244
Email: enquiries@headway.org.uk
Website: www.headway.org.uk
Headway Ireland
The National Association for Acquired Brain Injury in Ireland have offices in Dublin,
Cork, Kerry and Limerick. 1-3 Manor Street Business Park, Manor Street, Dublin 7
Tel: (01) 810 2066
www.headwayireland.ie
The Hemispherectomy Foundation
"The Hemispherectomy Foundation, a non-profit organization, was founded
to provide emotional, financial, and educational support to individuals and their
families who have undergone, or will undergo, a hemispherectomy or similar brain
surgery."
Website: http://hemifoundation.intuitwebsites.com
I-Can
Supports children with speech and language difficulties and their families. 4, Dyer’s
Buildings, Holborn, London EC1N 2QP Tel:0845 2254071
www.ican.org.uk
Kiloran Trust
www.kilorantrust.org.uk
The Kiloran Trust, opened in1996, was set up to provide breaks for those caring
full-time, at home, for a family member or friend. Given the tremendous pressures,
emotionally, physically and often economically, that full-time carers are invariably
under, the purpose is to give carers a supportive break when the person they care
for is in respite. Here they come into a comfortable, welcoming house where their
circumstances are understood and where they can unwind, meet others and enjoy the
luxury of spaciousness and time. We are located in a central but quiet part of London
and people are free to rest and take things gently whilst also having access to
the stimulation and variety that London has to offer. Since opening, well over 1,000
visitors have taken a week's break with us. We have recently appointed a new Director
and are about to undertake a strategic review to explore development potential and
expansion.
Noreen McIlvenna
157 Blythe Rd
London W14 0HL
020 7602 7404
Email: Kiltrust@aol.com
Mencap
Provides advice and support for people with a learning disability and their families
and carers in their own local communities., 123 Golden Lane, London EC1Y 0RT Telephone:
020 7454 0454
www.mencap.org.uk
National Rehabilitation Hospital
The social work dept at the hospital provides information and support to families
in Eire. National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co.
Dublin, Eire. Tel: +353 1 235-5000
www.nrh.ie
National Society for Epilepsy
The National Society for Epilepsy is committed to providing information and support
to people with epilepsy, their families, friends and professionals involved in their
care. Chesham Lane, Chalfont St Peter, Bucks, SL9 0RJ Tel: 01494 601300
Website: www.epilepsynse.org.uk
Reach Out
A comprehensive online information directory for disabled young people, their families and professionals within West Sussex
ReachOutWestSussex.org.uk
Scope
Provide information on any aspect of living with disability. PO Box 833, Milton
Keynes MK12 5NY
Tel: 0808 800 3333
www.scope.org.uk
Sibs
Support, advice and information for people who grow up with a brother or sister
with a disability , special need or illness. PO Box 50, York, YO1 9ZX Tel: 01904
550029
www.sibs.org.uk
Snap Cymru (Special Needs and Parent Support)
Offers information and support to families of children and young people who have
special educational needs in Wales.10 Coopers Yard, Curran Road, Cardiff CF10 5NB
Tel: 029 2038 8776
E-mail: centraloffice@snapcymru.org
Web: www.snapcymru.org
Support group for families affected by SSPE (subacute sclerosing panencephalitis)
in Turkey
www.sspedernegi.org/tr/index.asp?tur=sayfa&id=111
Last modified: March 2011