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Useful organisations

This section of DLF Data contains details of numerous voluntary organisations, Government agencies, support groups and other contacts that may be useful to older and disabled people and their carers. If you find any information that is incorrect please email Data Services to let us know which 'Contact' is incorrect and what information needs changing. If you would like to be added to the database please complete these questions.

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Provides support and information for families with children and young people affected by absence of the testes, whether congenital or acquired. Produces an information leaflet and a newsletter three times a year.


  • Romford

Promotes improved services for children and adults with difficulties caused by neurological disease or head injury. Focuses particularly on communication and eating needs. Team consists of therapists, engineers, doctors, lawyers, who offer range of specialist services including independent assessment and consultation. Therapy based on Bobath and other concepts. Training provided for carers and professionals. Carries out collaborative and consultative work with education, social and medical services, product design, development and research.


  • Hatherton Lodge
  • Avenue Road
  • Malvern
  • WR14 3AG

Provides support and encouragement to children and young people with ME aged five to 25. Activities include pen pal service, bi-monthly magazine, annual conference, support from counsellors, doctors and those with ME, a postal library and parents network. Range of publications available. Helpline is open 10am-2pm.


  • 10 Vermont Place
  • Tongwell
  • Milton Keynes
  • MK15 8JA

Offers support by telephone and letter to people with Beckwith-Wiedemann, and others interested in the disease. Publishes a newsletter and assists with research projects.


  • The Drum and Monkey
  • Hazelbury Bryan
  • DT10 2EE

Help children and their families tackle the challenges of young sight loss so that they can enjoy their childhood and realise their potential as adults. Services include: practical and emotional support, information and advice and mobility and life skills training. Provide access to grants for technology and equipment and produce large print books.


  • Hillfields
  • Reading Road
  • Reading
  • RG7 3YG

Rehabilitation programmes for families to carry out at home with volunteers, to do daily movement/stimulation programmes.


  • Old Kelways
  • Somerton Road
  • Bridgwater
  • TA10 9SJ

Helps parents and professionals with information on where to start if they think their child is having problems at school; what to do if they are having trouble getting an assessment for their child; where they can get professional legal help if needed at any stage during the assessment, statement or appeals procedures; how to choose the right special school and post 16 further education colleges; post 19 (adult) homes and educational establishments. Runs a local support group and produces publications including free information sheets on various autism spectrum disorders and other special needs topics. Helpline open Mon-Fri, 10am-4.30pm.


Helps young people under 21 years who have any form of cancer or leukaemia, and their families. Aims to improve treatment and clinical care, promote research and support children and their families by providing accommodation near to the hospital where the child is being treated. Provides care and counselling, short term holiday accommodation for crisis breaks, cash grants in cases of individual need and supports local nursing teams.


  • No. 1 Farriers Yard
  • Assembly London
  • Filton
  • W6 8JA

Provides an authoritative first point of reference for those involved with individuals with learning disabilities and challenging behaviour. Aims to be an easily accessible source of information and current developments within this field. Provides and sources support, advice and information, in addition to raising public awareness of challenging behaviour.


  • c/o The Old Courthouse
  • New Road Avenue
  • Chatham
  • ME4 6BE

Aims to fight and improve treatments for children who suffer with leukaemia.


  • 51 Great Ormond Street
  • London
  • WC1N 3JQ

Provides a support network for children with arthritis and their families. Provides practical help and support through a network and area family contact, and provides various educational and recreational opportunities.


  • Ground Floor
  • Amber Gate
  • Worcester
  • WR1 2AH

Provides emotional support to families of children affected by liver disease. Supplies information fact sheets and are active in the promotion of research.


  • 36 Great Charles Street
  • Birmingham
  • B3 3JY

Provide immediate financial aid, support, counselling and holidays for people under 21 who have cancer. CLIC Sargent Social Workers are based at cancer treatment centres in the UK and help families from the day of diagnosis.


  • Horatio House
  • 77-85 Fulham Palace Road
  • London
  • W6 8JA

Aims to promote public awareness and research of Crohn's disease and related disorders.


  • Parkgate House
  • 356 West Barnes Lane
  • Surrey
  • KT3 6NB

Provides opportunities to young stroke survivors to meet on a regular basis in the UK for the purposes of self-help and mutual support in order to return to a full and active life. Provides access to gyms, physiotherapy,exercise and swimming sessions. Provides a counselling service and helpline. Gives benefits, rights information, advice in higher education, training and job opportunities.


  • 9 Canon Harnett Court
  • Wolverton Mill
  • Milton Keynes
  • MK12 5NF

Provide information and support on childhood bedwetting, daytime wetting and soiling. Provide support via a telephone helpline, message boards and a comprehensive website . Sells a range of books, bedding protection and enuresis alarms.


  • 36 Old School House
  • Britannia Road
  • Kingswood
  • BS15 8DB

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. In addition to the programme of research carried out at UK hospitals, universities and the Foundation's centre, they also co-ordinate the international parent network (PARNET) for support, information and research. Organise a range of training seminars, workshops and projects for parents, professionals and children themselves.


  • 2nd Floor Offices
  • The Lyric Buildings
  • Carmarthen
  • SA31 1BD

Supports people who have haemochromatosis and advises on testing siblings and children. Promotes awareness of the condition. Publishes a quarterly newsletter.


  • PO Box 6356
  • Rugby
  • CV21 9PA

The Heartline Association provides information, contact and support for families who have children with congenital heart conditions. The main concern is the home environment, education and future employment of children with heart complaints.


  • 32 Little Heath
  • London
  • SE7 8HU

Organisation which supply information and support to people with hemiplegia and their families. Telephone helpline open Mon-Fri, 10am-1pm during school term time. Produce fact sheets, leaflets, newsletter and a video by children for children. Run workshops and organise sports and activities.


  • 6 Market Road
  • London
  • N7 9PW

Aims to assist disabled children in developing countries and the UK and is committed to furthering this work through voluntary effort.


  • Hope House
  • 2nd Floor West
  • HP1 1LR

Aims to create a society where the special needs of children with speech and language impairments are recognised, understood and met, allowing them the same opportunities in life as other children. Run two specialist schools, four language resource centres, and a national professional development programme offering courses to professionals including speech and language therapists and teachers.


  • 31 Angel Gate (Gate 5)
  • Goswell Road
  • London
  • EC1V 2PT

Family self support group, looking to meet the needs of their children and young adults who have a learning, physical and/or sensory disability.


  • The Irish Centre
  • Pretoria Road
  • London
  • N17 8DX

LOOK provides emotinal support and information on any issue relative to visual support. Links to families in the same area or other people with the same eye condition.


  • National College for the Blind (RNC)
  • Venns Lane
  • Hereford
  • HR1 1DT

Aims to grant the favourite wish of children with life-threatening illnesses aged between 3-18 years old.


  • 329-331 London Road Camberley
  • Camberley
  • GU15 3HQ

Family-centred charity which provides an innovative education for life for children with sensory motor disorders, which is tailored to their individual needs.


  • Philip Green House
  • Coventon Road
  • Aylesbury
  • HP19 9JL

STEPS is a national charity providing support, information and practical help for children and adults affected by clubfoot, hip dysplasia and other lower limb deficiencies. We have an online discussion forum on our website and we offer a family contact service where we can put individuals/families in contact with other individuals/families on our records who are in a similar situation.


  • Wright House
  • Crouchley Lane
  • Lymm
  • WA13 0AS

Provides support for parents with a child born without eyes or underdeveloped eyes through raising awareness, encouraging support between families, and providing financial assistance to MACS families who need to purchase equipment or services to help meet their specific needs.


  • PO Box 92
  • Holyhead
  • LL65 9AW

Works to promote the best possible palliative and supportive care for children with life-threatening and life-limiting conditions and their families. Provides a telephone helpline, database of useful organisations, publications, research, training and membership.


  • 4th Floor
  • Bridge House
  • Bristol
  • BS1 1QB

Provide funds of specialist medical treatment and therapy for sick and disabled Children in the UK. Some children need to go abroad for life saving treatment. Others are able to have treatment in the UK, but it needs to be funded, giving a better quality to their young lives.


  • 43a Little Mount Sion
  • Royal Tunbridge Wells
  • TN1 1YP

Offer support to families and individuals affected by rare chromosome disorders. Publish a newsletter three times a year. Produce a database detailing lifetime effects of rare chromosome disorders on affected members. Provide information for people affected by rare chromosome disorders and professionals. Open Mon-Fri, 9.00am - 5.00pm, answerphone at all times.


  • PO Box 2189
  • Caterham
  • Surrey
  • CR3 5GN

Facilitate research and support families of children with Williams Syndrome. Regional contacts around the country.


  • 161 High Street
  • Tonbridge
  • TN9 1BX

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