Additional complex needs

Addiss is a charity that provides information and resources about ADHD for parents, sufferers, teachers and health professionals. 

Website: www.addiss.co.uk
Email: info@addiss.co.uk
Tel: 020 8952 2800

Brainwaves seeks to help children between the ages of six month 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 Institute of Learning Disabilities aims to improve the lives of all persons with a Learning Disability.  Their website includes information for families and professionals. 

Website: www.bild.org.uk
Email: enquiries@bild.org.uk
Tel: 01562 723 010

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. 

Website: www.lunguk.org
Email: Email via the website
Tel: 08458 50 50 20

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.

Website: www.cerebra.org.uk
Email: info@cerebra.org.uk
Tel: 01267 244201

Hearing assessment, fitting and evaluation of amplification is free via the NHS. CHEARs offer the only independent specialised paediatric audiology facility for hearing assessment from birth to adulthood. For more information go to:

Website: www.chears.co.uk
Tel: 01763 263333

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.

Website: www.childgrowthfoundation.org
Email: info@childgrowthfoundation.org
Tel: 0208 995 0257

The goals of Caudwell Children are: to make donations to specific child cases of sickness, specialised medical requirements and dying wish holidays; To buy or build a property to aid children/children's charities; To continue to fulfil its half a million pound pledge to the NSPCC Full Stop Campaign.

The charity has made over 2000 donations to families with disabled children, donated almost £1million to help children with wheelchair needs, been independently acknowledged as the second largest voluntary provider of specialist equipment in the UK, supported children with over 300 different conditions and spent over £1.2 million on treatments and therapies for autistic children.

Website: www.caudwellchildren.com
Email: charity@caudwellchildren.com
Tel: 0845 300 1348

The foundation is part of a federation of family support groups around the world.  It has information on CdLS for families and professionals, a helpline and a regular newsletter. 

Website: www.cdls.org.uk
Email: info@cdls.org.uk
Tel: 01375 376 439

This is a support group for anyone involved with CHARGE.  They send out a regular newsletter, keeping families informed and up to date. 

Website: www.chargesyndrome.org.uk
Email: info@chargesyndrome.org.uk

An American website that has information about CHARGE syndrome, related disorders, therapies and outcomes. 

Website: www.chargesyndrome.org

Connect are a local voluntary organisation supporting families of children with disabilities in St Helens.

Website: www.connectparents.org.uk
Address: Connect
                 c/o Rosetree Cottage
                 Portico Lane
                 Prescot
                 L35 7JW

Contact a Family supports families who care for children with any disability or long-term health condition. They are a main source of information about rare disorders and are able to assist affected adults as well as children.

Website: www.cafamily.org.uk
Email: info@cafamily.org.uk
Tel: 0808 808 3555

Crossroads Care offers a variety of support services for carers. Services include a trained carer support worker who comes into the home to take over the caring responsibilities, enabling the primary carer to take a break.

Website: www.crossroads.org.uk
Email: Email via website
Tel: 0845 450 0350

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”.

Website: www.dash.org.uk
Email: Info@dash.org.uk
Tel: 0208 848 8324

Deaf Connections delivers specialist services to deaf adults in the West of Scotland. It works with health professionals and members of the Deaf community to improve Deaf people's access to health services. Deaf Connections provides a range of advice and information on health issues to the Deaf community and runs a wide variety of clubs and societies for Deaf and Hard of Hearing people from its base at the Glasgow Centre for the Deaf.

Website: www.deafconnections.co.uk
Email: enquiries@deafconnections.co.uk
Tel: 0141 420 1759

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.

Website: www.downs-syndrome.org.uk
Email: info@downs-syndrome.org.uk
Tel: 0845 230 0372

An American foundation supporting research, awareness and support related to dystonia.  The website includes information on the different forms of dystonia.

Website: www.dystonia-foundation.org

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.

Website: www.eveningchroniclesunshinefund.org.uk
Email: general@communityfoundation.org.uk
Tel: 0191 230 0689

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.

Website: www.fasaware.co.uk

A foundation that provides information about issues affecting the lives of people with learning disabilities. 

Website: www.learningdisabilities.org.uk
Email: Email via website
Tel: 020 7803 1100

An American website with information on different genetic disorders.

Website: http://ghr.nlm.nih.gov/

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.

Website: www.hamletcentre.org.uk
Email: admin@hamletcentre.org.uk
Tel: 01603 616094

Hi2u is a website with information on hidden impairments such as ADHD, Asperger’s Syndrome and Dyslexia. 

Website: www.hi2u.org.uk

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.

Website: www.ican.org.uk
Email: info@ican.org.uk
Tel: 0845 225 4071/0207 843 2510

A website with Cerebral Palsy and Neuromuscular Scoliosis information and links. 

Website: www.livingwithcerebralpalsy.com

Mencap is a UK charity for people with a learning disability, their families and professionals.

Website: www.mencap.org.uk
Email: help@mencap.org.uk
Tel: 0808 808 111

The Meningitis Trust provides services to anyone who has been affected by meningitis, including counselling, art therapy, one-to-one contacts, home/hospital visits and family days.

Website: www.meningitis-trust.org
Email: info@meningitis-trust.org
Tel: 01453 768001

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.

Website: www.motability.co.uk
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. 

Website: www.autism.org.uk
Email: nas@nas.org.uk
Tel: 020 7833 2299

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. 

Website: www.climb.org.uk
Email: fam.svcs@climb.org.uk
Tel: 0800 652 3181

An American organisation but their website has an A-Z of neurological disorders, providing information on each one.

Website: www.ninds.nih.gov/disorders

An award-winning site for parents, carers and learning disability professionals. It is a place to swap tips and hunt for information on all aspects of supporting people with learning disabilities.

Website: www.netbuddy.org.uk   

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.  

Website: www.newlifecharity.co.uk
Email: info@newlifecharity.co.uk
Tel: 01543 462 777

This website has a Health A-Z of different conditions and treatments.

Website: www.nhs.uk/Conditions

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. 

Website: www.nofas-uk.org
Email: nofas-uk@midlantic.org.uk
Tel: 08700 333 700

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).

Website: www.northtyneside.gov.uk/serviceitem.shtml?p_ID=376
Email: info@gmmlegal.co.uk
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. 

Website: www.pamis.org.uk

Partners in Policymaking is a leadership training course for disabled adults and parents of disabled children. It shows people how to ask the right questions and how to present their questions to people who work in services.

Website: www.partnersinpolicymaking.co.uk
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.

Website: www.pituitary.org.uk
Email: Email via website
Tel: 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.

Website: www.pmldnetwork.org
Email: pmldnetwork@mencap.org.uk
Tel: 020 7696 5549

RAD is a deaf-led organisation which promotes the welfare and interests of Deaf people. It provides a wide range of services for deaf people including translation services, social care, advice and support groups.

Website: www.royaldeaf.org.uk
Email: info@royaldeaf.org.uk
Tel: 0845 688 2525

The disability organisation in England and Wales whose focus is people with Cerebral Palsy.

Website: www.scope.org.uk
Email: webmaster@scope.org.uk
Tel: 0808 800 3333

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.

Website: www.rarechromo.org
Email: info@rarechromo.org
Tel: 01883 330766

VACTERL Association Support Group gives help and support to families affected by VACTERL Association or VATER Syndrome. 

Website: www.vacterl-association.org.uk
Email: info@vacterl-association.org.uk
Tel: 01752 482568

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. 

Website: www.1p36dsa.org
Email: Email via website