Additional complex needs
Brainwave seeks to help children between the ages of six months and 12 years old who have developmental delay, a brain injury or genetic condition. Brainwaves assess children and design child-centred therapy programmes for parents.
The British Lung Foundation is a charity for people affected by lung disease. Services include a helpline, the opportunity to speak to a paediatric respiratory nurse or counsellor and access to their support group network.
Email: Email via the website
Helpline: 03000 030 555 (Monday to Friday 10am-6pm)
Two charities recently merged to form Carers Trust (Crossroads Care and The Princess Royal Trust for Carers). Carers Trust run Carers' centres, the central hub of activity for carers in their area, providing information and emotional support, helping carers to access the services they need and working with carers to get their voices heard in planning services.
They also run Crossroads Care schemes, which provide a range of services to the carer, and person cared for, through fully trained carer support workers who take over caring resonsibilities, allowing carers to access vital breaks.
Caudwell Children is a national charity that exists to transform the lives of disabled children and their families across the UK. Applicants must live in the UK, be 18 or under and fit the charity's financial criteria.
They can provide the following equipment: powered wheelchairs, buggies, car seats, therapy tricycles and sensory equipment. In addition they can provide funding for specific therapies for children affected by cerebral palsy / acquired brain injury and autism. Caudwell Children's Enable Sport Programme provides sports equipment to enable disabled children to take part in competitive sport and their Destination Dreams holiday to Florida is an annual fully-supported group holiday for children fighting a life-threatening condition. The charity can also offer fundraising support for some treatments abroad and they have also launched a family service programme in selected regions which provides practical and emotional support for families.
Cerebra seeks to help improve the lives of children with brain related conditions. It conducts research, educates and directly supports children and their carers. Cerebra offers financial assistance as well as practical and emotional support to families.
An American website that has information about CHARGE syndrome, related disorders, therapies and outcomes.
The Child Growth Foundation, among other things, aims to: Support and encourage children and adults (and their families) with growth disorders; Promote and fund research into the causes and cure of growth disorders in children; Educate the public in general and workers in the medical profession in particular, in the problems and difficulties encountered by those with growth disorders.
Connect are a local voluntary organisation supporting families of children with disabilities in St Helens, Merseyside.
62 St Georges Road
Merseyside WA10 4LA
Tel: 07531 887758 and leave a message. Someone will return your call within one week.
Contact a Family provides information, support and advice to famlies who care for children with any disability or long-term health condition. The Contact a Family Directory online has descriptions of hundreds of medical conditions - including rare disorders - and details of relevant UK support groups.
DASH aims to provide advice, support and information that will enable disabled people to make choices about how they live their lives.
Their mission statement is: “To promote and enable equality of opportunity for all disabled people who reside, work or are undertaking educational or vocational training within the London Borough of Hillingdon and to ensure that all services are conducted in an holistic and inclusive manner”.
The DSA exists to create the environment where people with Down's syndrome can fulfil their individual potential. They provide information about all aspects of living with Down's syndrome including specialist advisers on social security benefits, education and health.
An American foundation supporting research, awareness and support related to dystonia. The website includes information on the different forms of dystonia.
The ECSF endeavours to enhance the lives of disabled children in the north east of England region and help everyone associated with the child. The fund provides equipment to the families of disabled children.
A website aimed to raise awareness on Foetal Alcohol Syndrome (FAS), give informed choice, provide information and support for people affected by and interested in FAS.
A foundation that provides information about issues affecting the lives of people with learning disabilities.
Email: Email via website
Tel: 020 7803 1100
The Foundation doesn't operate a Helpline. See Mencap.
An American website with information on different genetic disorders.
The Hamlet Centre Trust seeks to provide high quality services for the relief of children and young adults with special needs in Norfolk. At its headquarters in Norwich the Trust provides a wide range of activities for children with special needs and support and respite for families.
I CAN work to support the development of speech, language and communication skills in all children with a special focus on children with speech, language and communication needs.
Among other things, I CAN seek to: Increase public awareness of the problems children face; give expert advice to parents and families; provide assessments for children.
A website with Cerebral Palsy and Neuromuscular Scoliosis information and links.
Email: via website
Motability raises funds to provide financial help to Motability Scheme customers who would otherwise be unable to afford the type of car and any adaptations that they need. It administers the Government's Specialised Vehicles Fund which provides financial assistance for customers who need to travel in their wheelchairs. It provides technical support to customers and the adaptation and conversion industry.
Email: Email via website
Tel: 0845 456 4566
Provides a helpline, information, advice and support for parents and carers of autistic people. The organization works in many areas to help people with autism live their lives with as much independence as possible.
The National Information Centre for Metabolic Diseases works on behalf of children, young people, adults and families affected by metabolic disease. They provide confidential and impartial support, advice and information. They can also help medical professionals to learn more about the disorders.
An American organisation but their website has an A-Z of neurological disorders, providing information on each one.
The Newlife Foundation helps disabled and terminally ill children in the UK. It provides nurse services, equipment grants and links to medical research. They also conduct awareness campaigns.
Email: via the website
Nurse Services: 0800 902 0095 (Monday to Friday, 9.30am-5pm)
Office: 01543 462 777
This website has a Health A-Z of different conditions and treatments.
NOFAS-UK aims to improve the quality of life for children, adults, families and carers and communities affected by Foetal Alcohol Syndrome. Services include a helpline, support group meetings and playgroups for children, and resources for schools and families.
The NCCBS provides grants for children to continue or commence independent education, grants for clothing (usually for disabled applicants) and grants for computers (usually for disabled applicants).
Tel: 0191 236 5308
PAMIS is a Scottish charity that provides information and support for people with profound and multiple learning disabilities, their family and paid carers.
Partners in Policymaking is an umbrella name for a range of leadership training courses for disabled adults and parents and carers of disabled children. It shows people how to ask the right questions and how to present their questions to people who work in services.
Email/Tel: See website for region-specific contact details
The Pituitary Foundation provides support and information about Pituitary Disorders to patients, medical professionals and the pituitary community.
Email: Email via website
Support and Information Helpline: 0845 450 0375 (Monday to Friday, 10am-4pm)
Administration: 0845 450 0376
The PMLD Network is a network of people committed to improving the lives of people with profound and multiple learning disabilities. They bring people with PMLD and their families, carers and advocates together with statutory and voluntary agencies, share good practice, campaign and provide information and support.
Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. In addition to working with families it aims to promote awareness, assist in research and set up local support groups, among other things.
1p36 DSA is an organization composed primarily of parents and caregivers of individuals affected by 1p36 Deletion Syndrome. Their aim is to help individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy, happy and productive lives.
Email: Email via website