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Voluntary organisations for children with medical conditions

Below is a list of organisations who work with children who have medical conditions. Please scroll down the page or use the content list to jump to information within this page.

You can find more information about services for children and families in Surrey in the Parent Know How Directory. If you are involved in a organisation or group in Surrey, please check to make sure it is listed and if not, please contact the Family Information Service.


Action On Hearing Loss
The RNID campaigns and lobbies to raise awareness of deafness and hearing loss, providing services and through social, medical and technical research.

Action for Sick Children
Action for Sick Children was founded to ensure that sick children always receive the highest standard of care possible.

ADDERS (Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder Support)
Promotes awareness to Attention Deficit/Hyperactivity Disorder and provides information and as much free practical help as they can to sufferers, both adults and children, and their families.

ADDISS (Attention Deficit Disorder Information and Support Service)
Provides people-friendly information and resources about Attention Deficit Hyperactivity Disorder to anyone who needs assistance - parents, sufferers, teachers or health professionals.

Allergy UK (formerly known as the British Allergy Foundation)
Allergy UK is a medical charity dealing with allergy and can provides up to date information on all aspects of allergy, food intolerance and chemical sensitivity.

Anaphylaxis Campaign
Anaphylaxis Campaign helps the thousands of people in the UK who have life-threatening allergic reactions to peanuts and many other foods.

Anthony Nolan Trust
The Anthony Nolan Trust is the charity that takes back lives from leukaemia by being at the forefront of developments in tissue transplantation and bone marrow register management.

Arthritis Care
Arthritis Care provides information and support to help people cope with arthritis.

Association for Children with Heart Disorders for more information please refer to Children's Heart Association

Association For All Speech Impaired Children (AFASIC)
Afasic helps the children and young people affected by the hidden disability of speech, language and communication impairments. It provides support services and information to their families and the professionals working with them.

Association for Spina Bifida and Hydrocephalus
ASBAH provides information and advice about spina bifida and hydrocephalus to individuals, families and carers.

  • Surrey branch
    Surrey ASBAH is affiliated to national ASBAH and serves people living in the County of Surrey and the London Boroughs of Croydon, Hounslow, Kingston, Merton, Richmond and Sutton.

Asthma UK
Asthma UK is the charity dedicated to improving the health and well-being of the 5.2 million people in the UK whose lives are affected by asthma.

Ataxia UK
Ataxia support people affected by ataxia and fund research into causes and potential treatments.

AVERT is an international HIV and AIDS charity based in the UK, working to AVERT HIV and AIDS worldwide this includes the National AIDS helpline.


Beat is the working name of the Eating Disorders Association and supports people with eating disorders and their families.

Brain and Spine Foundation
The Brain and Spine Foundation develops research, education and information programmes to improve the prevention, treatment and care of people affected by disorders of the brain and spine and to stimulate greater allocation of resources across all neurological disorders.

British Deaf Association
The British Deaf Association represents the sign language community.

British Dyslexia Association
The British Dyslexia Association is the voice of dyslexic people and seeks a dyslexia friendly society that enables dyslexic people to reach their potential.

British Heart Foundation (BHF)
The BHF undertake research, vital prevention activity and campaign for quality care and support for everyone living with heart disease.

British Polio Fellowship
The British Polio Fellowship provides information and support to people with polio, their families and health care professionals.

Brittle Bone Society
The Brittle Bone Society is the only UK wide organisation providing support to people affected by the rare bone condition Osteogenesis Imperfecta (OI).


CLIC Sargent CLIC Sargent is the only UK organisation to offer children with cancer all round care and support.

Child Growth Foundation
Supports and encourage all persons (either children or adults) who have growth disorders, and their families, in any manner which is charitable in accordance with the law of the United Kingdom.

Child Brain Injury Trust (CBIT)
The Child Brain Injury Trust is a UK-wide charity offering support, information and training on acquired brain injury in children.

Children Heart Association
The Children's Heart Association (formerly The Association for Children with Heart Disorders) is a support group run by families and friends of cardiac children for families with, or who have had, children with heart disorders.

Cystic Fibrosis Research
Cystic Fibrosis is the UK's most common life-threatening inherited disease and the Cystic Fibrosis Trust is the UK's only national charity dedicated to all aspects of Cystic Fibrosis.


Deaf Education through Listening and Talking (DELTA)
DELTA supports deaf children, their families and practitioners who wish to follow an auditory oral route.

Diabetes UK
Diabetes UK works for people with diabetes, funding research, campaigning and helping people live with the condition.

Downs Syndrome Association
Helps people with Down's syndrome live full and rewarding lives.

Dyslexia Action
Dyslexia Action provides services and support for people with dyslexia and literacy difficulties.

Dyspraxia Foundation
The Foundation seeks to increase understanding of Dyspraxia, particularly among professionals in health and education.


Eating Disorders Association
Legal registered charity name for Beat.

Epilepsy Action
Epilepsy Action acts as the voice for people with epilepsy, their friends, families, carers, health professionals and the many other people on whose lives the condition has an impact.


Fragile X Society
Provide support, information and friendship to families whose children and relatives have fragile X syndrome. They help the many professionals who are working and caring for children and adults affected by fragile X.


Guillain Barre Syndrome Support Group of the UKProvides information and support to those affected by GBS, CIDP and related conditions spreading awareness of the illnesses and providing grants for research projects.


Haemophilia Society
The Haemophilia Society works for people with haemophilia, von Willebrand's or a related bleeding disorder, and their families to secure the best possible care, treatment and support.

Headway gives help and support to people affected by brain injury.

Height Matters (now Child Growth Foundation)
See Child Growth Foundationfor more information.

Huntingdon's Disease Association (HDA)
Supports people affected by Huntingdon's and provides information and advice to professionals who support Huntington's disease families. The HDA is financed through trusts, foundations, the statutory and corporate sectors, branches of the HDA, members and friends.

The Hyperactive Children's Support Group
HACSG helps ADHD/Hyperactive children and their families promoting a dietary approach to the problem of hyperactivity.



Juvenile Diabetes Research Foundation (JDRF)
JDRF recognise the challenges of living with type 1 diabetes and advocate to ensure that the condition is fully understood. They also provide information for families affected by the condition and encourage them to become directly involved in supporting research for the cure.


Leukaemia CARE
Leukaemia CARE exists to provide vital care and support to all those whose lives have been affected by leukaemia, lymphoma, myeloma and the allied blood disorders.

Look (National Federation Of Families With Visually Impaired Children)
Provides practical advice, emotional support and information about visual impairment and connect families with similar problems.


Mencap is the voice of learning disability. It values and supports people with a learning disability, their families and carers.

Meningitis Trust
The Meningitis Trust helps and supports everyone struggling to cope with the after effects and impact of meningitis or associated septicaemia.

Young Minds
YoungMinds is the UK's only national charity committed to improving the mental health and emotional well-being of all children and young people.

Muscular Dystrophy Campaign
The Muscular Dystrophy Campaign is the only UK charity focusing on all muscle disease.


National Association for Colitis and Crohn's Disease
The National Association for Colitis and Crohn's Disease (NACC) brings together people of all ages who have Crohn's Disease or Ulcerative Colitis, which includes Proctitis, their families and the health professionals involved in their care.

National Autistic Society
Champion the rights and interests of all people with autism and aim to help, support and services to individuals with autism and their families.

National Blind Children's Society
Aims to enable children and young people with visual impairment to achieve their educational and recreational goals.

National Deaf Children's Society (NDCS)
The National Deaf Children's Society (NDCS) is the national charity dedicated to creating a world without barriers for deaf children and young people.

National Eczema Society
The National Eczema Society aims to provide people with independent and practical advice about treating and managing eczema and also to raise awareness of the needs of eczema sufferers with healthcare professionals, teachers and the government.


Prader-Willi Syndrome Association
The only organisation in the UK which is dedicated to supporting people with Prader-Willi syndrome (PWS), their families, carers, and the professionals who work with them.


Reach (Arm & Hand Deficient)
Reach provides support and advice for children with hand or arm deficiencies, and their parents.

Restricted Growth Foundation (RGA)
The RGA provides vital information and support to improve the quality of life for persons of restricted growth, and their families.

Royal National Institute For Deaf People (RNID)
The RNID campaigns and lobbies to raise awareness of deafness and hearing loss, providing services and through social, medical and technical research.

Royal National Institute of Blind People (RNIB)
There are around two million people in the UK with sight problems and RNIB (Royal National Institute of Blind People) is the leading charity offering practical support, advice and information to anyone with a sight problem. Their pioneering work helps - not just with braille, Talking Books and computer training but with imaginative and practical solutions to everyday challenges.


Scoliosis Association
The Scoliosis Association aims to provide information about scoliosis, eliminate fear and stigma, and offer contacts for shared experiences.

Scope focus on people with cerebral palsy and aim to ensure that disabled people achieve equality in a society in which they are as valued and have the same human and civil rights as everyone else.

Sense (National Association For Deaf/Blind & Rubella Handicapped)
Sense supports and campaigns for children and adults who are deafblind. They provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. They also support people who have sensory impairments with additional disabilities.

Sickle Cell Society
The Sickle Cell Society believes that every sickle cell sufferer has the right to quality care. This can only be achieved if funding is made available to educate health carers and other professionals about the condition.

Spinal Injuries Association (SIA)
The Spinal Injuries Association supports people with spinal cord injury.

Steps (formerly the National Association for Children with Lower Limb Abnormalities)
Steps supports those affected by a lower limb conditions such as clubfoot or a hip condition.

Stroke Association
The Stroke Association is the only UK wide charity solely concerned with combating stroke in people of all ages. It funds research into prevention, treatment and better methods of rehabilitation, and helps stroke patients and their families directly through its Rehabilitation and Support Services.


Thalassaemia Society
Thalassaemia is a hereditary disease that is widespread in Mediterranean, African and Asian counties. The Society seeks to raise awareness about the disease and provide information about prevention and treatment.

Tuberous Sclerosis Association
The Tuberous Sclerosis Association supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis (TSC).

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  • Updated: 25 Jul 2016
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