A wide range of support groups and information on conditions
(A-T) is a progressive genetic condition which causes severe disability and shortens lives.The A-T Society works to improve quality of life and care for people living with A-T while promoting research to lengthen lives and find a cure.
Battens Disease Family Associaton
. The group of diseases known as Batten disease are rare, genetic, progressive neurodegenerative, metabolic diseases that occur in children and adults worldwide. The charity provides a helpline for carers and professionals, provides a national network of families, host educational conferences and increase awareness of Batten Disease among the public, medical and research world.
This charity provides support to any child and their family with a brain related condition (brain injuries, neurological disorders, mental disabilities, developmental problems). Their Parent Support service provides an extensive range of services including telephone helpline, information and advice, a grant scheme, vouchers to help fund speech therapy, a sensory and tactile toy lending scheme, and the use of a holiday home. If face to face advice is required, they have representatives in various regions.
. Metabolic diseases are life-threatening inheritable, genetic disorders in which errors of metabolism occur. Climb - Children Living with Inherited Metabolic Diseases is a national organisation working on behalf of children, young people, families, carers and support groups affected by metabolic diseases (genetic disorders). They currently provide information, advice and support on over 730 metabolic diseases.
Contact: For Families with Disabled Children
is a UK wide charity and provides support, advice and information for families with disabled children, no matter what their condition or disability. It produces a wide range of high quality literature on issues such as behaviour, sleep, financial issues and benefits, and managing stress. It has a free helpline based in London and Glasgow with advisors who can give up-to-date advice on all these issues. The helpline number is 0808 808 3555 and it is open from 9.30am-5.00pm, Monday- Friday.
Contact: East of England Parent Advisors
provide local support across Norfolk, Suffolk, Cambridgeshire and North Essex. They can be contacted at: firstname.lastname@example.org
Duchenne Family Support Group
is a national charity run by families for families affected by Duchennes Muscular Dystrophy, a severe neuromuscular disorder. It provides a positive national support network of parents, their families and professionals. The organisation helps bring families together for mutual support, sharing of information and experience, and social activities.
FABED - Families Affected by Eosinophilic Disorders
FABED is a registered charity set up to raise awareness of Eosinophilic conditions among the public and the medical profession through education, advocacy, creating awareness and support to families and patients/carers.
Muscular Dystrophy Campaign
is the leading UK charity focusing on all muscle disease and plays an active role in nationwide lobbying and campaigning for changes to improve the support given to patients.
Their telephone and email Information Service provides emotional and practical support and information on all muscle diseases and advice on how to apply for financial grants towards equipment and technology. The charity publishes a quarterly magazine and has a wide range of information available. Membership is free.
. Hosted by the Newlife Foundation for Disabled Children, this new service has been created by UK professionals to give families, patients and other professionals understandable, regularly updated key information.
The service holds information or references to over 3,000 conditions, thousands of condition relevant support organisations and hundreds of other bodies who offer related help or services. The service is also uniquely backed-up by qualified nurses who are contacted through a direct and confidential telephone helpline and email service.
disease refers to a group of diseases passed down through families in which fatty substances called lipids collect in the cells of the spleen, liver, and brain. The aim of the organisation is to make a positive difference to families affected by the disease through the provision of care, information and research.
They provide a 24 hour help line and 24 hour telephone help line and fund a dedicated Clinical Nurse Specialist to give support through advice, counselling, and specialist clinics.
offers support and information and has a network of support groups. Rett disorder is a complex, genetic, neurological condition which affects far more girls than boys.
The Organisation publishes a quarterly magazine and has over 1,000 members.
The Society for Mucopolysaccharide Diseases
(the MPS Society) is a voluntary support group founded in 1982, which represents from throughout the UK over 1200 children and adults suffering from Mucopolysaccharide and Related Lysosomal Storage Diseases including Fabry Disease, their families, carers and professionals.
is the national charity with a focus on cerebral palsy, a non-progressive disorder of the areas of the brain which control movement. In depth information is available on their website on all aspects of cerebral palsy and disability.
For children it offers activities, education and learning, children's short breaks and family support services. Their free phone service 0808 800 3333 provided by Scope and DIAL UK offer the best combination of local knowledge and national disability expertise, providing free, impartial and expert information, advice and support.
SWAN UK (Syndromes Without A Name)
. A charity which campaigns on behalf of families who have a child with an undiagnosed condition to gain equal rights and recognition. It provides support and information on a variety of subjects and links families together for mutual support.
Together for Short Lives
runs a national help and information service for anyone who cares for or knows a child or young person with a life-limiting or life-threatening condition.
They offer a unique information and help service from a dedicated team of the UK’s top children’s palliative care experts and specialists – including paediatricians, nursing staff, hospice staff, doctors and researchers. Together for Short Lives also has a database of over 1000 organisations and individuals working within children’s palliative care. Telephone 0845 108 2201.
You can also download a pack of free family factsheets
from their website.
provides support to families with a child with a rare chromosome disorder. It offers contact with other families through a network of local contacts and produces a comprehensive range of family-friendly, medically-verified leaflets on various rare chromsome disorders.
It works to promote awareness of rare chromosome disorders to the public and professionals and has many professional members. The Group supports more than 7,500 affected families worldwide.