- Contact a Family: http://www.cafamily.org.uk/
A UK charity for families with disabled children. It offers information on specific conditions and rare disorders.
209-211 City Road, London EC1V 1JN.
Tel 020 7608 8700 / Fax 020 7608 8701 / Minicom 020 7608 8702.
National Helpline 0808 808 3555 Freephone for parents and families (10.00am - 4.00pm Mon - Fri).
- Carers UK: http://www.carersuk.org/
"The voice of carers ... Carers give so much to society yet as a consequence of caring, they experience ill health, poverty and discrimination. Carers UK is an organisation of carers fighting to end this injustice"
- Carers Direct www.nhs.uk/carersdirect is a national information, advice and support service for carers in England. Available online 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.
- The Birthmark Support Group: http://www.birthmarksupportgroup.org.uk/
Its objective is to provide a UK based support group for anyone with a birthmark.
- Great Ormond Street Hospital, London: http://www.ich.ucl.ac.uk/
International centre of excellence for treating sick children and teaching and training children's specialists ... the largest centre for research into childhood illness outside the United States.
- International Glaucoma Association: http://www.glaucoma-association.com/
A patient-based organisation which works to prevent glaucoma blindness throughout the world by providing information, literature and advice
Tel. (0207) 737 3265 / Fax. (0207) 346 5929
- Hemi Help Group: http://www.hemihelp.org.uk/
Information and Support for Children with Hemiplegia.
Helpline 0845 123 2372 /Admin 0845 120 3713 / Fax. 0845 120 3723
- Changing Faces: http://www.changingfaces.org.uk/
A UK charity that supports and represents people who live with a condition that affects appearance.
Tel. (0207) 391 9270 (general) or 0300 0120 275 (support and advice) / Fax. 0845 4500 276
- LOOK: http://www.look-uk.org/
National Federation of Families with Visually Impaired Children.
Tel. (0121) 428 5038
- British Epilepsy Association: http://www.epilepsy.org.uk/
New Anstey House, Gate Way Drive, Yeadon, LEEDS LS19 7XY
Office phone: 0113 210 8800 / Fax: 0113 391 0300
Freephone Helpline: 0808 800 5050 (Monday to Thursday 9am to 4.30pm, Friday 9am to 4pm)
- NSE (National Society for Epilepsy): http://www.epilepsysociety.org.uk/
Tel. 01494 601300
- Young Epilepsy, St Piers Lane, Lingfield, Surrey. Tel: 01342 832243. email@example.com
- UK Self Help: http://www.ukselfhelp.info/
Imagine if all the health and social care professionals in this country had easy access to the experience and information of all of the UK Self Help Groups and Support Organisations …
- Sturge-Weber-Syndrom: http://www.sturge-weber.de/
Germany. Tel. 07134 - 17629 / Fax 07134 - 901993
- Nederlandse Sturge-Weber Vereniging: http://www.nswv.nl/
Netherlands. Tel. 046 - 4375836.
- L'Association Sturge-Weber France asso.orpha.net/SWF
- Sturge-Weber Sverige: www.sturge-weber.se
Other Support Groups
- The Sturge-Weber Foundation USA Tel. 973-895-4445 http://www.sturge-weber.org/
- The Sturge-Weber Foundation (Canada) Inc. Tel. (604) 942 - 9209 www.sturge-weber.ca