National support

National support

The Parent Partnership Services are neutral and do not recommend any particular organisations. 
 
Advisory Centre for Education (ACE) 
ACE provides free independent advice and information for parents and carers in England and Wales on a range of state education and schooling issues. 

Arthritis Care
Arthritis Care is here for all people with all forms of arthritis. They provide clear and accurate information about arthritis. The helplines team offers practical, confidential support backed up by a wealth of useful publications, including Arthritis News, our award winning magazine

Asthma UK
Provides advice, information and support for people with Asthma and for their families/carers.  Also provide free written materials to help people manage Asthma.

A-T Society (Ataxia Telangiectacisa Society)
Support group for families of children, who have Ataxia Telangiectacisa, a little known, neuro-degenerative disease.  
 
ADDISS: The National Attention Deficit Disorder Information and Support Service
We provide people-friendly information and resources about Attention Deficit Hyperactivity Disorder to anyone who needs assistance – parents, sufferers, teachers or health professionals. 

Living with ADHD
A new a improved website tailor-made for parents, teachers and teenagers with ADHD
   
The National Autistic Society (NAS)
This is a charity for people with autism (including Asperger syndrome), their families and carers.  The NAS provides a wide range of services, including an autism helpline, a befriending scheme, advocacy for education service, parent support service, schools, day centres and residential settings.

BIBIC – The British Institute for Brain Injured Children
BIBIC has been helping children achieve more of their true potential for over 30 years. It provides a service that offers parents/carers the opportunity to take a proactive role in their child’s development. 
 
Royal National Institute of the Blind (RNIB)
The Institute supports parents with an information service which provides advice and information pamphlets to help children, who are blind or partially sighted, to obtain access to the educational facilities they need.
   
Brittle Bone Society
The Society provides practical help and advice to people affected by Osteogenesis Imperfecta (O I).   

Carers UK 
Carers UK is a charity set up to help the millions of people who care for family or friends. It offers help to every carer, including young people. 

CEREBRA
Cerebra commissions and funds research to decrease the incidence of early damage to the brain and evaluates therapeutic approaches. It also supports families of children experiencing the effects of damage. 

Childline
Counselling service for children and young people.

Coram – Children’s Legal Centre 
The Children’s Legal Centre is an independent national charity concerned with law and policy affecting children and young people. They provide legal advice, information and representation for children and young people.
 
Communities Empowerment Network 
Communities Empowerment Network (CEN) provides advice, counselling, support, representation and training for people experiencing mistreatment and discrimination in education especially exclusion from school.
 
Contact a Family 
Provides support for families who care for children with disabilities and special needs. Has links with over 900 support groups and helps with linking families sharing the same disabilities for friendship and advice, especially for the rare medical conditions. A variety of useful fact sheets and booklets is available.
 
Council for Disabled Children
The Council promotes collaborative work between different organisations providing services and support for children and young people with disabilities and special educational needs. The Council aims to raise awareness of the needs of children with disabilities and those of their families through a range of consultancy and project work.

Cystic Fibrosis Trust
The Trust finances research, education, developing specialist centres and supporting individuals with Cystic Fibrosis and their families and carers. The Trust also provides support to professionals. 
 
National Deaf Children’s Society (NDCS)
The National Deaf Children’s Society (NDCS) is a UK charity, solely dedicated to the support of all deaf children and young deaf adults. The charity also offers support to their families and professionals working with them.
 
Deaf Access
Provides a diverse range of groups and services aimed at supporting independence and empowerment in Bromley.

RNID – Royal National Institute for the Deaf
RNID is the largest charity representing the 9 million deaf and hard of hearing people in the UK. As a membership charity, they aim to achieve a radically better quality of life for deaf and hard of hearing people.
 
Disabled Living Foundation
A national charity providing advice on equipment or assisted technology for independent living for both children and adults Leaflets are available. 
 
Down’s Heart Group
A support group for families with a member who has Down’s Syndrome with a heart condition.
 
Down’s Syndrome Association
Provides information, advice, counselling and support to parents/carers of people with Down’s Syndrome, as well as people with a professional interest. It advises on a wide range of social, educational and health needs relevant to Down’s Syndrome.

British Dyslexia Association
The BDA is the voice of dyslexic people. They aim to influence government and other institutions to promote a dyslexia friendly society, that enables dyslexic people of all ages to reach their full potential.
 
Dyslexia Action
The Institute has 27 main centres and over 140 smaller teaching units throughout the country. It carries out assessments for children and adults who may have dyslexia, provides tuition, trains specialist teachers, develops teaching materials and conducts research.
 
Dyspraxia Foundation
The Dyspraxia Foundation has a national network of some 34 local groups. They offer support and a wide range of activities specific to the child with dyspraxia. The Dyspraxia Foundation offers support and advice to parents and carers. Among other activities, it organises conferences and talks about dyspraxia and related topics for parents, carers and professionals.
 
Eating Disorder Association
Offers help, a listening ear and understanding to anyone affected by an eating disorder. Provides information about services in your area.
 
Epilepsy Action
Epilepsy Action is working to represent the interests and improve the quality of life for those living with epilepsy in the community. The Association offers, among other services, a national information service, a free phone helpline, fact sheets and booklets. The Association assists in the formation of local groups.
 
ERICC (Education & Resources for Improving Childhood Continence)
Provides free information and resources for improving childhood continence including bedwetting, daytime wetting, soiling and constipation. Also information relating to childhood continence with children with special educational needs.
 
Family Fund
We are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. They help ease the additional pressures families face. They can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together.

Family Lives
Family Lives is a national charity formerly known as Parentline Plus. It offers a range of services for families of children of any age, providing help and support in all aspects of family life.
 
Family Rights Group
A national organisation that works with families, practitioners, researchers and policy makers to improve the law, policy and practice for families who are involved with social services. The telephone advice service helps families, who have children in care or who are in contact with social services.
 
Family Services UK
The purpose of FSUK is to help stop the pain caused by mental health disorders. The hope is to provide mental health services to local organisations as well as individuals and families who are now beginning to demand better treatment and less waiting times.
 
FragileX Society
Provides support for families with Fragile X. Also provides leaflets, information, newsletter ad hold national family conferences.  

Talking Point
Talking Point exists to help children communicate. Their special focus is the children who find this hard: children with a communication disability. First stop online for information for communication development and disability advice for parents and professionals.
 
Centre for Studies on Inclusive Education (CSIE)
Publishes a large number of free and inexpensive leaflets and reports on inclusive education to help parents and professionals. Organises conferences and supports parents’ groups, students, schools and local authorities.
 
Independent Panel of Special Education Advice (IPSEA)
Provides parents with legal information on special educational needs processes. Can also represent parents at tribunal.

The Alliance for Inclusive Education 
This is a national campaigning organisation led by disabled people. The Alliance works to change laws, practices and procedures which discriminate against disabled young people. The Alliance works together with allies to build a social climate in which everyone has a valued place.

ITP (Immune Thrombocytopenic Purpura) Support Association
Support for adult and children affected by ITP and for their families. Also provides support for adults with ITP. 
   
KIDS
Working with disabled children, young people and their families. Kids London SEN Mediation Service aims to settle disputes that arise between parents and local authorities/schools about the special educational needs of children, and how best to meet those needs    
 
Kidscape
Kidscape is a charity involved in prevention of bulling and child abuse. The helpline is available for parents and teachers. Courses are available for other professionals. Workshops are available for children who have been bullied.

Max Appeal
Max Appeal is a national/international charity run by parents for parents/carers, their families and anyone affected by Di George syndrome, VCFS and 22q11.2 deletion. Holds events designed to make life enjoyable and provides information. Also provides a website chat room. 
 
MENCAP National Centre 
Provides information, advice and support to children, young people and adults with learning disabilities, and their families. The Royal Society MENCAP has a team of people working in Bedfordshire, to promote and support people with learning disabilities, their parents and carers.  There are 5 voluntary local societies and 13 Gateway clubs which offer varied programmes of leisure and fun.  

Mind 
Mind works throughout England and Wales. It provides information on all aspects of mental health to people who experience mental distress and to their families, to professionals and to the public. If offers mental health services through a network of local Mind associations, including; sheltered homes, drop-in centres, counselling, advocacy and employment schemes.

Muscular Dystrophy Campaign
Local support groups support and offer information, advice and support to people affected by muscular dystrophy, their families and friends. 

Disability Rights UK
Merger of National Centre for Independent Living (NCIL), RADAR and Disability Alliance. They promote personal assistance to enable independent living.
 
National Children’s Bureau
NCB is the leading national charity which supports children, young people, families and those who work with them. We aim to improve the well-being of children and young people across every aspect of their lives.
 
National Society for the Prevention of Cruelty to Children (NSPCC)
The Society offers an initial assessment service to families and an opportunity to talk through issues with qualified workers. Support groups for parents and children experiencing various difficulties are also available.

National Youth Advocacy Service
NYAS is a national charity providing socio-legal advice, information and advocacy services to children and young people up to the age of 25. NYAS provides a service to a child or young person whose voice is not being heard, through a national network of multi-disciplinary advocates and solicitors. 
 
Network 81
Provides free advice and guidance to parents, including on law relating to special educational needs. Befrienders can support parents at meetings and through the Statutory Assessment process. It helps parents by putting them in touch with others in their local area. Can also liaise with schools and local authorities on behalf of parents. Can provide support for tribunal appeals, including advocacy.
 
Newlife (foundation for disabled children)
Providing equipment to help disabled and terminally ill children in the UK.
 
NPPN National Parent Partnership Network
Offers information advice and support to parents and carers of children and young people with special educational needs.

Parent Support Group 
Working with the parents and carers of young people.

Parents for Inclusion (PI)
Set up by parents in 1984, PI is still run by parents to help each other and spread the word on inclusion. The Helpline and the Information Service are staffed by parents who have ‘been there and know the score’. Local group contacts can be obtained by phoning the Helpline.

Pre-School Learning Alliance
The Pre-school Learning Alliance is a leading early years membership organisation and one of the largest providers of quality childcare in England. They offer support to over 15,000 settings and impact positively on the care and education of over 800,000 young children and their families every year.

Rathbone
Rathbone is a national charity which helps around 13,500 young people a year learn and achieve. It runs a number of programmes for 14-16 year olds, who have been excluded from school. The Youth Choices scheme, for example, enables them to take control of their lives through training, accredited education, work placements and plenty of individual support. Rathbone’s work aims to provide an opportunity for young people to change their lives and realise their true potential.
 
Rett Syndrome Association UK
The only UK charity supporting families affected by Rett Syndrome. The association provides a network of self-help support groups and contact supporters for parents and carers. Telephone support and written and video information are also available.

SCOPE
The service supports disabled people and their families by providing practical advice and information, training and employment options, and residential and community care to help people take charge of their own lives and make their own choices.

SENSE
Supports and campaigns for people who are deaf-blind, their families, their carers and the professionals who work with them. Helps people of all ages with sight or hearing impairment and additional disabilities. Sense’s specialist services include family centres offering educational support to deaf-blind people and their families. There are also group homes for deaf blind adults and a network of branches across the country, supporting families. 
 
SIBS
Support groups for brothers and sisters of children and adults with disabilities.

Sickle Cell Society
The Society provides a wide range of services, including; information, advice, counselling, financial help, holidays, briefings, seminars and training. The Society also works with schools to improve their understanding of pupils with sickle cell disorder.
 
AFASIC
Is a UK charity representing children and young adults with speech and language communication impairments, working for their inclusion in society and supporting their parents and carers. They are Unlocking Speech and Language.
 
Shine
Provides advisory and welfare services, practical assistance and information to parents and families, who have children with Spina Bifida and /or hydrocephalus. A medical advisor is available.
 
British Stammering Association (BSA)
BSA provides information on stammering for people of all ages and supports research into the causes and treatment of stammering. It also runs a free advice and information service,
a parents’ network through which parents can contact each other and produces information leaflets. The BSA can tell parents how to contact the local speech and language therapy service.
 
Sturge-Weber Foundation
Care and support for families and those that are affected by Sturge Weber. The foundation runs a family weekend day, provides a newsletter and provides support and information. 

Syndromes Without A Name (SWAN)
A national organisation for families, who have a child with an undiagnosed condition. SWAN has about 1500 members in 6 countries. The organisation in mainly for children, but there are also some adult members. Provides free newsletters and leaflets on request. 
 
Twins and Multiple Births Association (Tamba)
Tamba offers support, information and friendship for families with twins, triplets and more. They also run specialist support groups, catering for families with particular needs and a Bereavement Support Group. Freephone Twinline offers confidential support, listening and information service for parents of twins, triplets or more.
 
VICTA (Visually Impaired Children Taking Action) 
Provides information and support for families with visually impaired children. Can provide assistance with acquiring equipment and services to help improve the quality of life for visually impaired children and young people.

YoungMinds
Is a national charity committed to improving the mental health of all children and provides helpful information for children and parents. Many publications are available free to parents, including on bullying, Attention Deficit Hyperactivity Disorder and young person’s eating problems. Offers a free, confidential telephone helpline for any adult with concerns about the mental health of a child or young person.