ASBAH does not endorse any of the sites listed below or give any guarantee that information contained within them is correct.
Parenting, Pregnancy and Birth
ARC - a helpline giving support in making decisions during antenatal testing as to whether to continue with the pregnancy
Babyloss - a UK resource for anyone who has been touched by the loss of a baby, at any stage during pregnancy, or just after birth
The Baby Registry - UK parenting and pregnancy site
Birth Centre website - developed as a tool for health professionals, women considering pregnancy or who are already pregnant and seeking evidence-based advice on health and birth options, and journalists working in the health sector
Bullying Online - helps parents and pupils deal with school bullying
Care Confidential - pregnancy and post abortion helpline. Advice in planning or unplanned pregnancy, abortion or baby loss
Contact a family - provides support to parents / carers of children with disabilities and also helps parents contact other families who have similar / same conditions
Midwives Information and Resource Service (MIDIRS) - an educational charity providing information and practical resources to maternity healthcare professionals
NHS Choices - online maternity guide covering conception, pregnancy and the first weeks with a new baby
Parents with Disabilities Online - lots of useful links, information and Parents-Chat listserver
Pregnancy and Maternal Hydrocephalus Database - study for shunted mothers with hydrocephalus who have given birth
VIPs-in-SEN - features a mix of comprehensive information to help parents and has a campaigning edge for improving provision in special educational needs
www.forparentsbyparents.com - looks at all the life changing elements of parenthood, even the grim bits!! Through the sharing of personal experiences, parents offer support, reassurance, information, ideas and practical solutions
Disability Information and Support
Canine Partners - assists disabled people to enjoy greater independence and a better quality of life through the help of specially trained dogs
Disability Alliance - produces the disability rights handbook and is the authority on social security benefits for disabled people
Disabledunited.com - included on the site is a unique Friends and Dating facility, chat room and message forums
Early Support - improving services for families with young disabled children
EntitledTo - helps you ascertain online which benefits you may be able to claim
Family Fund - a fund available for children under 16 with a severe condition who meet the income and residency criteria. Funding given for holidays, driving lessons for carers etc
Incontact - advice on continence issues
LearnerStuff - a site giving free access to driving theory practice test and advice to disabled drivers
Motability - a national charity that may be able to offer financial assistance towards the cost of a suitable car, adaptations, driving lessons or a wheelchair accessible vehicle. Also offers help with obtaining powered wheelchairs and scooters
NNATPIP - provides support for those who promote the outcomes of children and young people with a physical impairment and/or severe medical need
PromoCon - promoting continence and product awareness
Shaw Trust - a charity to help disabled people access the work place
Skill - National Bureau for Students with Disabilities promotes equality of opportunity for disabled people in post 16 education, training and employment
Wheelchair Children - runs group and individual wheelchair-skills events training for manual and powered wheelchair users
Whizz-Kidz - a national charity that provides customised mobility equipment to disabled children and young people to increase their independence and improve the quality of life for them and their families
Holidays and Leisure
Accessible Vacation Home Exchange - a free service by the Independent Living Institute
Disabled Holiday Directory - for holidays in the UK and abroad
Holiday Care - gives advice and help with the organisation of holidays for people with disabilities
Jubilee Sailing Trust - a charity that aims to promote the integration of able-bodied and disabled people through the adventure of tall ship sailing
Kids Out - provides fun and happiness for disadvantaged children. Funding for holidays, carers, respite, play equipment etc
PHAB - physically handicapped and able bodied group encouraging children to come together in regional clubs for for holidays
U Can Do I.T. - Wigram Aid to Ability for Critically-disabled Internet Students: WAACIS is a charity that helps disabled people by providing computer training on how to use the Internet in their own homes at an affordable cost
Vitalise - a national charity offering breaks for disabled people and carers
Disability Resources
A resource site - for teachers of children with special educational needs
Advice Guide - a site run by the Citizens Advice Bureau giving information on a range of subjects including the Disability Discrimination Act
BEMA>D - acts as a bridge between the Statutory Services and The Disabled Black and Ethnic Minority in the community
Dis-ability.info - an online resource for disabled people
Disability Now - the UK's most comprehensive archive of disability information
Disabled Parents Network - national organisation for disabled people who are parents or hope to become parents
DisabilityWorld - a lot of information about disability sites
IIH Website - information on Ideopathic Intracranial Hypertension
Independent Living Institute - promoting disabled people's self-determination
Kennedy Krieger Institute - an internationally recognized facility dedicated to improving the lives of children and adolescents with pediatric developmental disabilities
The Neurological Alliance - brings together over 60 charities working to make life better for people with a neurological condition
Trust-ed - provides educational services for young people with acquired brain injury
Outsiders - for people who feel isolated because of social or physical disabilities
RADAR (Royal Association for Disability and Rehabilitation)
Reachout Magazine - a meeting place for people with disabilities (includes a live chat area)
Other Links
British Epilepsy Association
Connexions - a young persons service which provides information, advice, guidance and support
Equality and Human Rights Commission - an independent body set up by the Government to help eliminate discrimination and to promote equality of opportunity. The site contains a significant amount of campaign and resource information
Healthlinkusa - information on a wide range of health links
Latex Aware - support group for those allergic to latex, aiming to raise awareness, provide a support network and push for investigation
National Council for Voluntary Organisations
Relate - offers advice, relationship counselling, sex therapy workshops, mediation and support
Tethered Cord Resources - A Personal Story, a UK Resource
UK Self Help Groups - a wide ranging directory giving telephone numbers and web addresses
www.medicdirect.co.uk - a free, interactive website which provides a complete health information resource for both consumers and medical practitioners
Spina Bifida and Hydrocephalus - Overseas Organisations
Arbeitsgemeinschaft Spina Bifida und Hydrocephalus - information in German.
Australian Spina Bifida and Hydrocephalus Association
BOSK - information in Dutch
The Danish Spina Bifida and Hydrocephalus Assocation (Danish name: Rygmarvsbrokforeningen af 1988)
The Hydrocephalus Foundation - aims to contribute emotional support to people with Hydrocephalus and their families
Information in Polish about hydrocephalus and spina bifida
International Federation for Hydrocephalus and Spina Bifida
The Irish Association for Spina Bifida and Hydrocephalus
Queensland Association for People with Spina Bifida or Hydrocephalus
Spina Bifida Association of America
Spina Bifida and Hydrocephalus Association of Canada
Spina Bifida and Hydrocephalus Association of Ontario
The Spina Bifida Association of Quebec
The Spina Bifida and Hydrocephalus Assocation of South Australia
The Hydrocephalus Support Association who are in NSW Australia can be emailed on: triplej@accsoft.com.au
Spina Bifida/Hydrocephalus Contacts
Joe's website - written by his mum
Ryans Page - Ryan was born at 23 weeks with hydrocephalus
The SB Center - Message Boards
Scottish Spina Bifida Association
Shannon Russell's home pages - stories, jokes and poetry
Simon Allanach's home pages - Simon's interests and information about hydrocephalus
Spina Bifida Central - chat room, message board and links
Spina Bifida Social Centre - created for people with Spina Bifida, or friends or relatives of people with SB to meet and have fun and regular chats
Tim's website - information about hydrocephalus and oesophageal atresi in English, Finnish and Swedish
