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User Groups and Charities Across East Midlands and Wider

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Arteriovenous Malformation

AVM Support UK

Aunique group working throughout the UK offering free, patient friendly information and support to all whose lives have been affected by the rare condition Arteriovenous Malformation (a tangle of abnormal blood vessels).

Arthritis (Birmingham Arthritis Resource Centre) (The Children’s Chronic Arthritis Association)


The Arthrogryposis Group

Offer telephone support on a regional cluster basis where all the volunteers of our Contact Network have a wide experience of arthrogryposis. Also arrange area get-togethers and social events where people can meet each other and exchange experiences.

There is an ‘information share’ area on the website with postings from people diagnosed with this condition.


Asthma Uk

Has an advice line and lots of information and links on the website.


Ataxia UK

Ataxia UK works in two main ways: funding research into finding treatments and a cure for ataxia, and supporting people through a range of services.

Attention Deficit Hyperactivity Disorder (ADHD)

The Hyperactive Children's Support Group (HACSG)

A registered charity which has been successfully helping ADHD/Hyperactive children and their families for over 30 years. The HACSG is Britain's leading proponent of a dietary approach to the problem of hyperactivity.


Autism Independent UK

Autistic Society

The National Autistic Society

Parents for the Early intervention of Autism (Peach)

Back Pain

Features information and also newsflashes regarding researchers needing input from sufferers as participants.

Barth Syndrome

Information for affected families and medical professionals and aiming to help to achieve a fast and accurate diagnosis, followed by the best care and support.

Beckwith-Wiedemann Syndrome (BWS)

Beckwith-Wiedemann Syndrome Support Group

A forum for sufferers to share problems and information and to act as a self-help group. It aims to promote both public and professional awareness of BWS and to support and encourage research.


Education and Resources for Improving Childhood Continence (ERIC)

This website provides information and support on childhood bedwetting, daytime wetting, constipation and soiling to children, young people, parents and professionals.


The Child Bereavement Trust

The Compassionate friends

The Laura Centre (Leicester)

Cruse Bereavement Care

PAPYRUS Prevention of Young Suicide

Survivors of Bereavement by Suicide

Winston’s Wish The Charity for Bereaved Children

Birth Defects

Newlife Foundation for Disabled Children

Support, links to medical research and information.


Baldder Extrophy Family Association

A support network  for families of children born with bladder/cloacal exstrophy and/or epispadias. The Association is based in the UK with strong links worldwide.
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