Born to Be Different - September 2007

This script contains details of organisations providing support for parents and families expecting or caring for a child with a disability or serious health condition.

When a child, or expected baby, is diagnosed with a disability parents can experience feelings of disbelief, anger, despair and isolation. The following organisations help by providing practical and emotional support and in-depth information to anyone who cares for a child with a disability or special need:

Whatever medical condition your child has, Contact a Family can provide support, advice and information and can also put families in touch with each other. Contact the freephone Helpline on 0808 808 3555 or Textphone for people with hearing difficulties on 0808 808 3556 (Mondays - Fridays 10am-4pm, Monday evenings 5.30-7.30pm). The Contact a Family website features a directory of specific conditions and rare disorders at www.cafamily.org.uk. There's also a website enabling secure linking between parents of disabled children in the UK and internationally at www.makingcontact.org.

BDF Newlife offers comfort, support and information to anyone concerned about or affected by birth conditions. Their confidential Nurse Helpline is managed by a team of BDF nurses who have extensive experience of a wide range of birth defects. Contact them on 08700 70 70 20 (Mondays - Fridays 9.30am-5pm) or check out their website at www.bdfnewlife.co.uk.

The organisation Antenatal Results and Choices or ARC provides non-directive support and information to parents throughout the antenatal testing process and when an abnormality is diagnosed in their unborn baby. They offer continued support to parents whatever decision is made. Call their helpline on 0207 631 0285 (Mondays - Fridays 10am-5pm). You can also email to info@arc-uk.org or go to their website www.arc-uk.org.

The Channel 4 series Born to be Different features children with specific disabilities - and the following organisations and support groups can provide advice and help:

The Down's Syndrome Association provides information and support for people with Down's syndrome, their families and carers, as well as being a resource for interested professionals. They can be contacted on 0845 230 0372 (Mondays - Fridays 10am-4pm). Their website is at www.downs-syndrome.org.uk.

The Arthrogryposis Group (TAG) is a support group for people, or families with children who have the condition Arthrogryposis Multiplex Congenita. TAG offers contact, support and regional information at their website www.tagonline.org.uk or call 01299 825 781(Mondays - Thursdays 9.30-2.30pm).

If your child has a rare chromosome disorder you may find it helpful to get in touch with Unique - The Rare Chromosome Disorder Support Group. Unique is a source of information and mutual support for families of children with any rare chromosome disorders. Contact Unique on 01883 330766 (Mondays - Fridays 9.30am-3pm answer phone at other times). Or you can email to info@rarechromo.org or visit their website at www.rarechromo.org.

The Tuberous Sclerosis Association (TSA) offers lifeline support for those affected by TSC, their families & carers. Call 0115 923 4301 (Mondays - Fridays 9am-6pm answerphone at other times). Visit their website www.tuberous-sclerosis.org.

The Restricted Growth Association can provide information and support to help lessen the fear and distress of families when a child with achondroplasia or restricted growth is diagnosed. They can be contacted on 01935 841364 (Mondays - Thursdays 9am-5pm, Fridays 9am - 12 midday, Tuesdays 6pm - 9pm) or by email to office@restrictedgrowth.co.uk. Their website is at www.restrictedgrowth.co.uk.

The Association for Spina Bifida and Hydrocephalus (ASBAH) offers advice and information to individuals and their families. They have advisors in England, Wales and Northern Ireland and you can contact them on local rate 0845 450 7755 (Mondays to Fridays 10am-4pm) or visit their website at www.asbah.org.

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