The following organisations help by providing information and support to anyone who cares for a child with a disability or special need
Contact a Family
www.cafamily.org.uk
Provides support, advice and information on whatever condition your child has. Directory of specific conditions and rare disorders. Can also put families in touch with each other.
Helpline: 0808 808 3555 (Monday - Friday, 9.30am - 5pm)
helpline@cafamily.org.uk
Newlife Foundation
http://www.newlifecharity.co.uk
Comfort, support and information to anyone concerned about or affected by child disability. Their confidential Nurse Helpline is managed by a team of nurses who have extensive experience of a wide range of birth defects. Online Nurse Chat Service available
Helpline: 0800 902 0095 (lines open Monday - Friday, 9.30am - 5pm, Wednesday to 7pm)
Email: nurse@newlifecharity.co.uk
Antenatal Results and Choices or ARC
www.arc-uk.org
Provide support and information to parents making difficult choices following antenatal tests for abnormalities.
Helpline: 0845 077 2290 (lines open Mondays - Fridays, 10am - 5.30pm)
Email: info@arc-uk.org
Rainbow Trust
http://www.rainbowtrust.org.uk
Rainbow Trust Children's Charity provide support for families who have a child with a life threatening or terminal illness.
Sibs
http://www.sibs.org.uk/
Offering support and information for the brothers and sisters of disabled or chronically ill children and adults.
ACE Education
www.ace-ed.org.uk
Offering advice and information for education issues, based on current education guidance for children aged 5-16 years in England.
Advice: 0300 0115 142 (lines open Monday - Friday 10am - 1pm)
Specialist advice
Shine - Spina Bifida & Hydrocephalus (England, Wales, Northern Ireland)
http://www.shinecharity.org.uk/
Offering advice and information about Spina Bifida and Hydrocephalus.
Information: 01733 555 988 (lines open Monday Friday 10am - 4pm)
Scottish Spina Bifida Association
www.ssba.org.uk
Offering advice and information about Spina Bifida and Hydrocephalus in Scotland
Helpline: 08459 11 11 12 (lines open Monday - Friday 10am - 4pm)
Epilepsy Action
http://www.epilepsy.org.uk/info
Supporting anyone affected by epilepsy, and providing information on all forms epilepsy.
Email: helpline@epilepsy.org.uk
The Arthrogryposis Group - TAG
www.tagonline.org.uk
TAG are a support group for people with the condition Arthrogryposis Multiplex Congenita and their families.
Email: info@taguk.org.uk
Restricted Growth Association
www.restrictedgrowth.co.uk
Offering support and information to families of children diagnosed with achondroplasia or restricted growth.
Information: 01733 759458 (lines open Monday - Friday 9am-5pm, closes 1pm on Wednesday, Tuesday eve 6pm 9pm)
Email: office@restrictedgrowth.co.uk
Achondroplasia UK
www.achondroplasia.co.uk
Offering online support to parents of children diagnosed with achondroplasia.
The Tuberous Sclerosis Association - TSA
www.tuberous-sclerosis.org
Offering support to those affected by Tuberous Sclerosis Complex, their families and carers.
The Down's Syndrome Association
www.downs-syndrome.org.uk
Providing information and support to anyone with Down's syndrome, their families and carers.
Information: 0333 1212 300 (lines open Monday - Friday, 9am - 5pm)
Email: info@downs-syndrome.org.uk
Unique - The Rare Chromosome Disorder Support Group
www.rarechromo.org
Unique is a source of information and mutual support for families of children with any rare chromosome disorders, as well as for the professionals who work with them. Website contains downloadable leaflets on individual chromosome disorders including Trisomy 9P.
Information: 01883 330766 (lines open Monday - Friday, 9am - 6pm).
Email: info@rarechromo.org
Diabetes UK
www.diabetes.org.uk
Offering support to anyone with diabetes and helping people live with the condition.
Careline: 0845 120 2960 (lines open Monday to Friday, 9am - 5pm)
Email: careline@diabetes.org.uk
The National Autistic Society - NAS
www.autism.org.uk
Providing information and advice to anyone with Autism or Aspergers Syndrome, and their families. Go online for links to NAS Scotland, NAS Northern Ireland, NAS Wales and regional / local contact.
Helpline: 0808 800 4104 (lines open Monday - Friday, 10am - 4pm)
MS Society
www.mssociety.org.uk
Providing information to anyone with Multiple Sclerosis and their families. Information for regional contacts are online.
Information on call charges:
0800 - Free from BT land lines. Other networks may charge and mobile costs will be incurred.
0808 - Free from BT land lines. Other networks may charge and mobile costs will be incurred.
0845 Free with BT land lines call packages, otherwise charged at 2p per minute daytime and weekend, 5p per minute evenings. Other networks may charge and mobile costs will be incurred.
0300 - Calls cost standard national rate plus a 13.1p set up charge per call from a BT landline. Calls from other networks may be higher and from mobiles will cost considerably more.
0844 - Calls from BT land lines cost up to 5p per minute and 5p per call as part of many BT call packages, otherwise a 13.1p set up charge per call will be incurred. Calls from other networks may be higher and from mobiles will cost considerably more.
