Additional complex needs

Addiss (The National Attention Deficit Disorder Information and Support Service)

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

Brainwave

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.

Website: www.brainwave.org.uk
Email: enquiries@brainwave.org.uk
Tel: 01278 429089

British Institute of Learning Disabilities

The British Institute of Learning Disabilities aims to improve the lives of all people 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

British Lung Foundation

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.blf.org.uk
Email: Email via the website
Helpline: 03000 030 555 (Monday to Friday 10am-6pm)

Carers Trust

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.

Website: www.carers.org.uk
Email: info@carers.org
Tel: 0844 800 4361

Caudwell Children

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. 

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

CdLS UK and Ireland (the Cornelia de Lange Syndrome Foundation)

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

Cerebra

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
Helpline: (Freephone) 0800 328 1159

CHARGE Family Support Group

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

The CHARGE Syndrome Foundation

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

Website: www.chargesyndrome.org

Child Growth Foundation

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

CMV Action

CMV Action offer advice, support and friendship to anyone affected by Congenital CMV, advocating for families and working with a number of medical professionals who have an interest in this field.

Tel: 0808 802 0030
Email: info@cmvaction.org.uk
Website: http://cmvaction.org.uk/

Connect (St.Helens)

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

Website: www.connectparents.org.uk
Address: Connect
              62 St Georges Road
              St Helens
              Merseyside WA10 4LA
Tel: 07531 887758 and leave a message. Someone will return your call within one week.

Contact a Family

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.

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

DASH (Hillingdon, London)

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: 020 8848 8319

Down’s Syndrome Association

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: 0333 1212 300

Dystonia Medical Research Foundation

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

Evening Chronicle Sunshine Fund (ECSF) (North East England)

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: via website online enquiry form or contact  Sunshine Fund Director on carroll.pattison@ncjmedia.co.uk
Tel: 0191 201 6289

FAS Aware

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

Foundation for People with Learning Disabilities

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

The Foundation doesn't operate a Helpline. See Mencap.

Genetics Home Reference

An American website with information on different genetic disorders.

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

Hamlet Centre Trust (Norfolk)

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 766566 (Children's Services) or 01603 616094 (Adults' Services)

I Can

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
Information: 0845 225 4073 or  020 7843 2552
Switchboard: 0845 225 4071 or 020 7843 2510

Living with Cerebral Palsy and or a Neurological Disability

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

Website: www.livingwithcerebralpalsy.com
Email: via website

Mencap

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
Information and Advice: 0808 808 1111
England Office: 020 7454 0454
Northern Ireland Office: 02890 691351
Cymru Office: 02920 747588

Meningitis Now

Meningitis Now 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.MeningitisNow.org
Email: helpline@MeningitisNow.org
24 hour Helpline: 0808 8010 388
Head Office: 01453 768000

Motability

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

The National Autistic Society

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
Helpline: 0808 800 4104 (Monday to Friday, excluding Bank Holidays, 10am-4pm)
Head Office: 020 7833 2299

The National Information Centre for Metabolic Diseases

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

National Institute of Neurological Disorders and Stroke

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

Website: www.ninds.nih.gov/disorders

Newlife Foundation

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: via the website
Nurse Services: 0800 902 0095 (Monday to Friday, 9.30am-5pm)
Office: 01543 462 777

NHS Choices

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

Website: www.nhs.uk/Conditions

NOFAS-UK (National Organisation for Foetal Alcohol Syndrome UK)

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: info@nofas-uk.org
Helpline: 020 8458 5951

Northern Counties Children’s Benevolent Society (NCCBS) (North of England)

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 (Scotland)

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 (England and Wales)

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.

Website: www.partnersinpolicymaking.co.uk
Email/Tel: See website for region-specific contact details

The Pituitary Foundation

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
Support and Information Helpline: 0845 450 0375 (Monday to Friday, 10am-4pm)
Administration: 0845 450 0376

PMLD Network

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

Scope

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

Website: www.scope.org.uk
Email: response@scope.org.uk
Freephone Tel: 0808 800 3333 (Monday to Friday, 9am-5pm)

Unique

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

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

Website: www.vacterl-association.org.uk
Help and support email: support@vacterl-association.org.uk
General information email: info@vacterl-association.org.uk
Tel: 01752 482568

1p36 Deletion Support & Awareness

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