National Organisations
10 Station Road
Mill Hill
London
NW7 2JU
The National Attention Deficit Disorder Information and Support Service (ADDISS)
provides information and resources about Attention Deficit Hyperactivity
Disorder to anyone who needs assistance, such as parents, sufferers and
education or health professionals. ADDISS also offers training to
parents, teachers, Learning Support Assistants and healthcare
professionals, and works closely with support groups across the UK.
It supports a multi-disciplinary assessment and treatment protocol,
including educational and behavioural interventions, with or without
medication.
Afasic (Association For All Speech Impaired Children)
See entry in Education - non-statutory section.
18 Stephenson Way
London
NW1 2HD
Arthritis Care is the UK's largest voluntary organisation working
with and for all people with arthritis. It provides information
and support on a range of issues related to living with arthritis.
Arthritis Care campaigns locally and nationally to make sure people with
arthritis have access to the treatments and services they deserve.
South East region office
209 Crescent Road
New Barnet
EN4 8SB
This organisation provides advice, information and support to
parents before and after the birth of a baby, around the time of
diagnosis and ongoing support.
105 Judd Street
London
WC1H 9NE
RNIB can help anyone with a visual impairment, advising on a
range of subjects including benefits, mobility, housing, leisure
activities and eye health.
Bradbury House
33-34 Market Street
Highbridge
Somerset
TA9 3BW
The National Blind Children's Society's mission is to enable blind,
partially sighted and visually impaired children and young people to
achieve their educational and recreational goals.
30 Guthrie Street
Dundee
DD1 5BS
We support anyone affected by Osteogenesis Imperfecta.
Tower House
Fishergate
York
YO10 4UA
Care Co-ordination Network UK (CCNUK) is a networking organisation
promoting and supporting key working for disabled children and their
families in England, Northern Ireland, Scotland and Wales. Its mission
is to work in partnership with disabled children, their families and
professionals, to ensure that all families throughout the UK have access
to high quality care co-ordination or key worker services.
20 - 25 Glasshouse Yard
London
EC1A 4JT
Carers UK campaign for the rights and recognition of carers
as well as providing advice and information to carers and the people
they care for about their entitlements to benefits and other support.
Advisers take calls on Carers Line on Wednesday and Thursday 10.00am
to 12 noon and 2.00pm to 4.00pm. At other times carers can leave
their details to be sent a free carers information pack.
Freepost SWC3360
Carmarthen
SA31 1ZY
Cerebra provide support for families and carers
of children with brain-related conditions – brain injuries, neurological
disorders, mental disabilities, developmental problems.
This includes support services, information,
advice, legal service, grants scheme, online e-learning course,
quarterly newsletter, children’s personal portfolio, postal lending
library, sleep problem solving, stress helpline and holiday house.
c/o Friends Meeting House
Northgate
Rochester
Kent
ME1 1LS
The CBF exists to demonstrate that individuals with severe learning
disabilities who are described as having challenging behaviour can enjoy
normal life opportunities when their behaviour is properly understood
and appropriately managed, and to support parents and carers through
education and information to enable this to happen. The CBF provides a
range of free or affordable resources; it has support networks for
parents and carers and is active in promoting understanding and good
practice and in influencing policy.
Changing Faces Centre
33 – 37 University Street
London
WC1E 6JN
Although this organisation focuses on facial disfigurements,
it also provides support and information about disfigurements to other
parts of the body. It will help those born with disfigurements and also
those acquired in later life. The head office has a database of local
support groups, and also runs workshops for parents and professionals.
Tadworth Court
Tadworth
Surrey
KT20 5RU
The Children's Trust provides care, education and therapy to children with
multiple disabilities and complex health needs. We provide long- and
short-term care, transitional care (including care for children who are
technology dependent) and outreach care, as well as residential
special education for children with profound and multiple learning
difficulties. In addition we provide residential and community based
rehabilitation programmes for children with an acquired brain injury.
1st Floor
Green Man Tower
332b Goswell Road
London
EC1V 7LQ
A support and information organisation for those with and
affected by Cleft Lip and Palate, with a range of very useful
publications, many available via the website.
209 - 211 City Road
London
EC1V 1JN
This organisation provides information, support and advice on
all disabilities, however rare, and can often put families in touch with
one another. The publications and fact sheets are extremely
comprehensive, as is the website.
11 London Road
Bromley
Kent
BR1 1BY
| Tel: |
0208 464 7211 |
|
0208 464 0623 - Out of hours service |
| Fax: |
0208 313 0472 |
| Website: |
www.cftrust.org.uk |
This is a charitable organisation focussing on medical
research, support of children with Cystic Fibrosis and advice and
information to their families.
15 Dufferin Street
London
EC1Y 8UR
| Contact: |
Ruth Wallace |
| Tel: |
0808 800 8880 - Freephone Helpline (voice and text) |
|
020 7490 8656 (voice and text) |
| Fax: |
020 7251 5020 |
| E-mail: |
helpline@ndcs.org.uk |
| Website: |
www.ndcs.org.uk |
Registered Charity no.1016532
The National Deaf Children's Society is the only UK charity
solely dedicated to the support of deaf children, deaf young people,
their families and the professionals working with them.
Services include:
- A Freephone Helpline offering advice on education, benefits and
support with appeals and tribunals
- Events for families and young deaf people including arts, sports, outdoor
activities and parenting days
- Free publications and an online discussion group for parents on
the website
- A purpose-built Listening Bus® travelling to UK schools and audiology
clinics attended by deaf children
- An equipment loan scheme and grants to help parents on low incomes to buy
essential equipment
- An audiologist and technology team that can give advice about
deafness and equipment
- Membership for families and professionals
19 - 23 Featherstone Street
London
EC1Y 8SL
Information Line (Freephone):
RNID is the largest charity working to change the world for the UK’s 9
million deaf and hard of hearing people. They do this with the help of
their
members, by campaigning and lobbying, raising awareness of deafness and
hearing loss, providing services and through social, medical and
technical research.
DebRA House
13 Wellington Business Park
Dukes Ride
Crowthorne
RG45 6LS
This is the national charity of the genetic skin blistering
condition, Epidermolysis Bullosa, and offers support and information to
those affected and their families.
10 Parkway
London
NW1 7AA
Diabetes UK Careline:
| Tel: |
0845 120 2960* |
| Textphone: |
020 7424 1031 Mon - Fri 9am-5pm |
|
Counsellor available |
*Calls cost no more than 4p per minute. Calls from mobiles
vary.
Diabetes UK is the largest organisation in the UK working for people
with diabetes, funding research, campaigning and helping people live
with the condition. They provide information and support.
There are also local voluntary support groups, all run by people living
with diabetes. For details of the nearest family support groups
catering for children with diabetes and their parents, either phone the
office or e-mail voluntarygroups@diabetes.org.uk.
Langdon Down Centre
2A Langdon Park
Teddington
TW11 9PS
This organisation provides information and support for people with
Down's syndrome, their families and carers, and the professionals who
work with them. They strive to improve knowledge of the condition
and champion the rights of people with Down's syndrome.
8 West Alley
Hitchin
SG5 1EG
The objects of the Dyspraxia Foundation are to support individuals and
families affected by dyspraxia, to promote better diagnostic and
treatment facilities for those who have dyspraxia, to help professionals
in health and education to assist those with dyspraxia, and to promote
awareness and understanding of dyspraxia.
The Dyspraxia Foundation publishes leaflets, books and guides for
parents, those who have dyspraxia and for professionals. The Dyspraxia
Foundation also organises conferences and supports a network of local
groups across the United Kingdom, as well as supporting a group for
adults who have dyspraxia.
Hill House
Highgate Hill
London
N19 5NA
This society offers practical advice and support about the
management and treatment of eczema. The National Eczema Society
supplies free booklets for teenagers called “Live Your Life”. They also
provide many fact-sheets and booklets on the management and treatment of
eczema and the surrounding issues. Other booklets that they provide for
free are: ‘Childhood Atopic Eczema - your questions answered’.
7B Saville Street
Malton
North Yorkshire
YO17 7LL
The organisation provides information,
advice and support on all aspects of Encephalitis, and is active in
raising awareness of and promoting research into the condition.
Head office:
New Anstey House
Gate Way Drive
Yeadon
Leeds
LS19 7XY
Freepost address:
Freepost
Leeds
LS19 7YY
Epilepsy Action has a very comprehensive website, with
details about a wide range of services. There are web pages
specifically for children and teenagers, and also one dedicated to the
needs of teenage girls.
St Piers Lane
Lingfield
Surrey
RH7 6PW
The NCYPE is the UK's major provider of specialist services for
children and young people with complex epilepsy and other neurological
conditions. It provides day and residential education places for
students aged 5 to 25, a fully staffed health centre, and a range of
epilepsy diagnostic, assessment, treatment, rehabilitation and outreach
services.
Root End House
6 Stortford Road
Great Dunmow
Essex
CM6 1DA
The Fragile X Society provides support, information and advice to families whose children have Fragile X syndrome.
Fragile X syndrome is the most common cause of inherited learning
disabilities.
The Family Fund
See entry in Financial Matters section.
Contact: Caron Lane - Head of Advice & Infomation Service
4 Swan Courtyard
Coventry Road
Birmingham
B26 1BU
Mencap provides a range of services for children and adults with a learning
disability, including support to their parents and carers. The helpline
and information service also provides a holiday resource list containing
information about holidays for children and adults with a learning disability.
It has inclusion resources for early years education. The Gateway Award
8-13 is intended to bring children and young people together in an inclusive
way to enable them to take part in a range of activities.
BDF Centre
Hemlock Way
Cannock
Staffordshire
WS11 7GF
BDF Newlife is the UK’s leading child health research
and care charity. It aims to tackle inborn conditions through research,
services, grants and awareness.
12 City Forum
250 City Road
London
EC1V 8AF
Radar is an organisation of disabled people, set up to
campaign for a better lifestyle for disabled people and their families.
It aims to influence policies, regulations and legislation which have or
will have an impact on disabled people. It provides advice and
information about living with all aspects of disability, publishes fact-sheets
and books, and works alongside a range of local and national
organisations around the UK.
Newplan House
41 East Street
Epsom
KT17 1BL
Sense is dedicated to helping people who have a visual impairment
and/or hearing impairment and additional disabilities. They
provide specialist services for individuals, their families, carers and
other professionals who work with them.
PO Box 617
Addlestone
Surrey
KT15 9AP
Special Kids in the UK provide support, information and friendship for
families of children with special needs.
SIA House
2 Trueman Place
Oldbrook
Milton Keynes
MK6 2HH
SIA is controlled and run by spinal cord injured people
themselves to assist those with similar disabilities get back into an
ordinary life following injury. Services provided include Freephone
Helpline, Peer Support Service, Community Peer Support Service, Link
Scheme, Directory of Personal Injury Solicitors, Publications, Fact-sheet
and Website.
15 Old Ford Road
London
E2 9PJ
BSA is the only national organisation for adults and children who
stammer, run by people who stammer. Its mission is to initiate and
support research into stammering, identify and promote effective
therapies and offer support to all whose lives are affected by
stammering.
28 Portland Place
London
W1B 1LY
SANDS offers support for parents, families, and friends when
a baby is stillborn or dies soon after birth. Contact for details of
any local support groups.
240 City Road
London
EC1V 2PR
The Stroke Association is the only national charity solely concerned
with helping everyone affected by stroke. It funds research into
prevention, treatment and better methods of rehabilitation, and helps
stroke patients and their families directly through its community
services and by distribution of its free magazine, Stroke News.
They have fact-sheets on strokes in children.
Contact: Elizabeth Swingwood
6 Acorn Close
Great Wyrley
Walsall
West Midlands
WS6 6HP
SWAN has been set up to promote the welfare of children who suffer from undiagnosed
conditions and provides support and information to their families. Links can be
made with other families, including those in other countries.
Working Families
See entry in Working Parents/Carers section.
|
