Further support

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The Birth Defects Foundation (BDF)
BDF Centre
Hemlock Business Park
Hemlock Way
Cannock WS11 7GF
Tel: 01543 468888
Helpline: 08700 70 70 20 (Mon-Fri 9.30am-5pm)
E-mail: help@birthdefects.co.uk
Website: www.bdfcharity.co.uk
Provides support, information and grants to families with a child with an inborn condition. The organisation also carries out research into conditions developed in utero and provides news about the latest developments affecting the children. The website itself is a huge source of information, good advice and training for families, couples who are trying for a baby and medical practitioners.

Contact a Family
209-211 City Road
London EC1V 1JN
Helpline: 0808 808 3555 (Mon-Fri 10am-4pm)
Textphone 0808 808 3556 (Mon-Fri 10am-4pm)
E-mail: info@cafamily.org.uk
Website: www.cafamily.org.uk
Supports families that are caring for disabled children and children with specific health conditions, including rare disorders. They produce a range of factsheets on issues including benefits, special educational needs and social services assessments.

Face 2 Face
PO Box 204
Hereford HR4 0WT
Tel: 01432 370860
E-mail: face2facenetwork@scope.org.uk
Website: http://face2facenetwork.org.uk
A network of trained volunteer befrienders who can help parents make positive adjustments to the news that their child has a disability. Face 2 Face is free and confidential and can support parents of children with any type of disability or special need. A befriender can either visit you at home or you can agree another convenient location.

Unique – Rare Chromosome Disorder Support Group
PO Box 2189
Caterham
Surrey CR3 5GN
Tel: 01883 330766
E-mail: info@rarechromo.org
Website: www.rarechromo.org
Links families whose children have similar clinical or practical problems and set up local groups throughout the UK for families affected by any rare chromosome disorders.

Association for Spina Bifida and Hydrocephalus (ASBAH)
42 Park Road
Peterborough PE1 2UQ
Tel: 01733 555988
E-mail: info@asbah.org
Website: www.asbah.org
Provides information and advice about spina bifida and hydrocephalus. Services are targeted towards support to parents around the birth of their baby or diagnosis of the disability; helping young people access services; and responding to the needs of adults with spina bifida and/or hydrocephalus. ASBAH employs a network of advisers throughout England, Wales and Northern Ireland who deliver advice, support and advocacy services.

Scottish Spina Bifida Association
6 Blackie Street
Glasgow G3 8TN
Helpline: 08459 11 11 12 (Mon-Fri 9.30am-4pm)
E-mail: familysupport@ssba.org.uk
Website: www.ssba.org.uk
Seeks to increase public awareness and understanding of individuals with Spina Bifida, hydrocephalus and related conditions. Aims to support all those affected to identify their needs and to empower them to make informed choices and decisions. Their Scotland-wide 'Family Support Service' offers a local rate helpline (above) and also will arrange home and hospital visits throughout Scotland where necessary.

Down's Syndrome Association
Langdon Down Centre
2a Langdon Park
Teddington TW11 9PS
Tel: 0845 230 0372
E-mail: info@downs-syndrome.org.uk
Website: www.downs-syndrome.org.uk
Charity dedicated to supporting people with Down's syndrome – about 1 in 1,000 people – their families and carers as well as providing information for those with a professional interest.

Down's Syndrome Scotland
158/160 Balgreen Road
Edinburgh EH11 3AU
Tel: 0131 313 4225
E-mail: info@dsscotland.org.uk
Website: www.dsscotland.org.uk
A membership-based organisation which works to improve the quality of life for everyone with Down's syndrome in Scotland. It includes a guide to state benefits, a list of helpful literature and education for people with Down's syndrome.

The Arthrogryposis Group (TAG)
Tel: 01299 825781
E-mail: taguk@aol.com
Website: www.tagonline.org.uk
Offers support, contact and information for affected children/members and their families. Activities include raising professional and public awareness of the condition; a range of family events organised by regional contacts; a national annual conference; quarterly newsletter and a wide range of information, details on request. The group represents the families of over 400 children and 200 adults.

Tuberous Sclerosis Association
PO Box 9644
Bromsgrove B61 0FP
Tel: 01527 871898
Website: www.tuberous-sclerosis.org
Supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis. Runs a group for mildly affected adults, produces publications, runs events and has specialist clinics around the country.

Restricted Growth Association
PO Box 4744
Dorchester DT2 9FA
Tel: 01308 898445
E-mail: office@restrictedgrowth.co.uk
Website: www.restrictedgrowth.co.uk
Provides information and support to help lessen the fear and distress of families when a child is diagnosed with achondroplasia or restricted growth.

Achondroplasia.co.uk
Tel: 01225 840147 (normal working hours)
Website: www.achondroplasia.co.uk
Provides support to those affected by achondroplasia and those caring for them – both parents and professionals. The site includes information on the condition, its diagnosis and health supervision from birth to early adulthood. There is a discussion forum and links to other sources of information are included.

The Dwarf Athletic Association UK
41 Kenilworth Drive
Hazel Grove
Stockport SK7 5LG
Tel: 0161 355 5399
E-mail: info@daauk.org
Website: www.daauk.org
Brings together people of small stature to participate in sport and compete against each other. There are monthly sporting activities and social events organised throughout the year in many regions.

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