Useful Organisations

Supports families with the best possible guidance and information on a wide range of special needs topics. They bring families together to support each other. And they help families to campaign, volunteer and fundraise to improve life for themselves and others. Local services and projects operate in some areas. Also provide advice on special needs education.

Free Telephone Helpline: 0808 808 3555

www.contact.org.uk

Provides a range of parking benefits and other motoring concessions for people with severe mobility difficulties, aged two years and over. You can access information about this scheme at 

www.gov.uk/apply-blue-badge

Supports carers who support family or friends in need of care with information advice and campaigning for rights. 

www.carersuk.org

Provides information and support to help deal with challenging behaviour. 

Family Support Line: 0300 666 0126  

www.challengingbehaviour.org.uk

The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). It enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema. It is available to anyone with a disability aged 8 or older. See website for eligibility details and how to claim. 

www.ceacard.co.uk

Provides advice on disability law, including special educational needs. 

www.dls.org.uk

Cerebra has a wide range of information and support for families with children with brain-related conditions, and has conducted research into PWS, via the University of Birmingham. 

Tel: 0800 328 1159 

www.cerebra.org.uk

The umbrella body for the disabled children's sector bringing together professionals, practitioners and policy-makers. It has a wide range of resources on a number of topics including legal issues and education. www.councilfordisabledchildren.org.uk

Grants for equipment, holidays and services for children with special needs. 

www.familyfund.org.uk

IPSEA is a national charity which helps children and young people with special educational needs and disabilities across England get the appropriate education, training and support which they are entitled to under the law. 

www.ipsea.org.uk

Makaton is a language programme that combines signs, symbols and speech to empower anyone living with learning or communication difficulties to understand and be understood. Makaton has brought positive transformation to millions of lives by giving people a way to express themselves independently, overcoming frustration and promoting inclusion. The Makaton Charity exists to ensure that everyone living with learning or communication difficulties has the tools and resources they need to understand and be understood. Visit makaton.org to find out more about the impact Makaton has on beneficiaries and their families or support networks.

Meic is the information, advice and advocacy service for children and young people in Wales aged 0-25. Meic is a bilingual service that can be contacted, confidentially and free, by phone on 08088023456, text on 84001, or online chat through its website. The helpline operates between 8am and midnight every single day of the year.  

www.meiccymru.org

Help and support on all aspects of learning disability for both children and adults. Numerous factsheets available. Local services and projects operate in many areas.

Free telephone helpline: 0808 808 1111 

Open 9am to 5pm, Monday to Friday www.mencap.org.uk

The Society for Endocrinology has developed the You and Your Hormones website, an education resource aimed at students, teachers and members of the public, which covers hormones and hormone-related conditions, including a section on Prader-Willi Syndrome.

yourhormones.info

SOS!SEN is a national charity aiming to empower parents and carers of children with SEN to tackle successfully themselves the difficulties they face when battling for their children’s rights. 

www.sossen.org.uk

We have compiled a downloadable list of organisations that can help you access funding, as well as those who can also provide grants themselves, including to help with equipment, holidays, housing and days out.

Click here to download

Helps people to find out what is available to them in benefits, grants and other financial help or funding. 

www.turn2us.org.uk

Whizz-kids provides disabled children and young people with vital mobility equipment, and life journey services. 

www.whizz-kidz.org.uk