Ataxia Telangiectasia
http://www.atcp.org
Achondroplasia
Information, pictures of people with the condition, and an open forum.
www.achondroplasia
Acquired Brain Injury
Child Brain Injury Trust (CBIT)
http://www.cbituk.org/headinj.html/
British Institute for Brain Injured Children (BIBIC)
http://www.bibic.org.uk/
Headway - National Head Injuries Association
http://www.headway.org.uk/
Arthritis
Arthritis Care
http://www.arthritiscare.org.uk/
Brittle Bones
Brittle Bone Society
http://www.brittlebone.org/
Cerebral Palsy
If you need support, information, advice or just someone to talk to, get in
touch with the Cerebral Palsy Helpline. It is free, friendly and confidential
cphelpline@scope.org.uk
Cerebral Palsy Resources on the Internet
www.healthcyclopedia.com/cerebral_palsy.html
International Cerebral Palsy Society
http://www.icps.org.uk/
Living with Epilepsy and Cerebral Palsy
http://www.leandcp.plus.com/
Communication difficulties:
AFASIC provides support to children, parents, carers and professionals
including publications and training.
http://www.afasic.org.uk/
I CAN aims to support children with communication needs and provides
information and training.
www.ican.org.uk
The National Autistic Society provides support, information and training
programmes for parents/carers and professionals.
http://www.nas.org.uk
Semantic pragmatic disorder (SPD) support provides information and
references for parent/carers and professionals
www.spdsupport.org.uk
Cystic Fibrosis
Cystic Fibrosis Research Trust
http://www.cftrust.org.uk/
Down’s Syndrome
A website for parents and professionals. ‘DownsEd’ promote the education
and development of children with Down's syndrome through research and
information
http://www.downsed.org
Dyslexia
British Dyslexia Association
http://www.bda-dyslexia.org.uk/
Epilepsy
British Epilepsy Association
http://www.epilepsy.org.uk/
Hearing Impairment
Royal National Institute for Deaf People (RNID)
RNID aims to make daily life better for deaf and hard of hearing people.
Campaigns, information, services and support of scientific and technological
research are some of the ways they try to help. They also support other
organisations in their aim to provide better services for the deaf and hard of
hearing.
www.rnid.org.uk
National Deaf Children’s Society (NDCS)
NDCS is the leading provider of impartial information and individual advocacy
on every aspect of childhood deafness. NDCS can help with welfare rights
and benefit claims, making education choices, advising on health, audiology
and technology, or simply as someone to talk to.
www.ndcs.org.uk
Gloucestershire Deaf Association (GDA)
GDA provides a centre for the Deaf community in the County. They run a
Youth Club and summer playscheme, British Sign Language courses and an
equipment room for people to "See and Try before they Buy".
http://www.glosdeaf.com
The Council for the Advancement of Communications with Deaf People
(CACDP) is a registered charity that is raising standards of communication
between deaf and hearing people. They offer a range of nationally accredited
qualifications including British Sign Languages (BSL). CACDP is also the
registration body for professional British Sign Language/English interpreters.
http://www.cacdp.org.uk/
Hemiplegia
HemiHelp for Children with Hemiplegia
http://www.hemihelp.org.uk
Learning Disability
British Institute of Learning Disabilities (BILD)
http://www.bild.org.uk/
Mencap
http://www.mencap.org.uk/
ME
Action for ME and Chronic Fatigue
http://www.afme.org.uk/
Muscular Dystrophy
Muscular Dystrophy Campaign
http://www.muscular-dystrophy.org.uk/
Muscular Dystrophy Campaign
http://www.muscular-dystrophy.org/
Multi agency care pathways for children with life threatening and life limiting
conditionswww.act.org.uk
Neurological Disorders and Stroke
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/
Noonan’s Syndrome
The Noonan Syndrome Support Group
www.noonansyndrome.org/groupnews.htmlndrome
Prader Willi Syndrome
http://pwsa.co.uk/main.php?category=3
Spinal Muscular Atrophy
Jennifer Trust for Spinal Muscular Atrophy
http://www.jtsma.org.uk/
Tourette’s Syndrome
http://www.tourettesyndrome.net
Tourette’s Spectrum Association
http://www.tourettesyndrome.org/
Upper Limb deficiency
REACH - Association for Children with Hand or Arm Deficiency
http://www.reach.org.uk/
Visual Impairment:
LOOK – National Federation of Families with Visually Impaired Children employs family support officers to provide support and information to families
and groups and to act as a voice for families with visually impaired children.
LOOK has a number of parent support groups.
www.look-uk.org
National Blind Children’s Society (NBCS) aims to enable blind and partially
sighted children and young people to achieve their recreational and
educational goals. The organisation offers five key services, Family Support
and Information, Advocacy, Information Technology Support Service,
CustomEyes Books and Activities.
www.nbcs.org.uk
Royal National Institute for the Blind (RNIB)is the UK’s leading charity offering
information, support and advice to over two million people with sight
problems. Visit the Parents Place on the website for lots of useful information
on the issues affecting you and your child.
www.rnib.org.uk/parents
SENSE is for families with deaf/blind children. It provides information for those
caring for children and is relevant for parents, grandparents and carers. Their
Family Network provides opportunities for people to meet, stay in contact and
have fun.
www.sense.org.uk
Vision Aid is an organisation providing help, advice and support to visually
impaired children and their families, throughout the UK. Their purpose is to
turn initial fears into hope, giving families encouragement and support as they
cope with the difficult diagnosis of blindness in their child.
www.visionaid.org.uk
General Websites:
Aids to Communication in Education (Oxford ACE Centre)
http://www.ace-centre.org.uk
Advisory Centre for Education
http://www.ace-ed.org.uk/
After 16 (Choices and Challenges for Young Disabled People)
http://www.after16.org.uk/
Contact a Family
www.cafamily.org.uk
Council for Disabled Children
www.ncb.org.uk/cdc.htmDisability, Pregnancy and Parenthood International
www.dppi.org.uk/
Disability Awareness in Action
www.daa.org.uk
Disability Rights Commission
http://www.drc-gb.org/
Diversity Directory (Guide to Equality and Diversity Consultancies)
http://www.diversityuk.co.uk/
Disability Rights and Information Network
http://www.disability-network.org.uk/
Disability Equality in Education
http://www.diseed.org.uk/
Special Needs Family Fun
http://www.family-friendly-fun.com
face2face
http://www.face2facenetwork.org.uk/
Phab England
http://www.phabengland.org.uk/
Wheelchair Children
www.wheelchairchildren.org.uk
Whizz Kidz
http://www.whizz-kidz.org.uk/