Other sources of support for your child

Sense supports people with a unique range of disabilities, and sometimes our experience or services aren’t suitable for everyone. When this happens, we recommend one of the following organisations to provide the specialised support needed.

All these charities and services operate across the UK unless otherwise stated.

Alstrom Syndrome UK

A patient-led organisation offering support services which include access to the AS specialist clinics.

Bardet-Biedl Syndrome UK

Supporting people with Bardet-Biedl Syndrome, their families, and carers in the UK.

Batten Disease Family Association

Supports families into the group of neurodegenerative diseases commonly known as Batten disease.

British Association for Counselling and Psychotherapy (BACP)

 The professional association for members of the counselling professions in the UK.

CHARGE Family Support Group

A network of individuals, parents, families and professionals for people with CHARGE Syndrome.

ClearVision Project

A postal lending library of children’s books designed to be shared by visually impaired and sighted children and adults.


Helping families with disabled children with a free helpline, support services and parent guides.

Family Fund

Supporting families raising a disabled or seriously ill child or young person.

Guide Dogs

A wide range of services with and without dogs to support people living with a vision impairment.


A charity in the North of England supporting people living with sight loss and a range of other disabilities.

Independent Provider of Special Education Advice (IPSEA)

Free and independent legal advice and support to families of children and young people with special educational needs and disabilities (SEND).


Mentoring, events, forums and parent support for visually impaired young people. Based in Hereford, but work across the UK.

Macular Society

Free information and support to those living with macular disease, along with their family and friends.

National Autistic Society

Support for autistic people and their families.

National Deaf Children’s Society (NCDS)

Expert support on childhood deafness across the UK.

The Norrie Disease Foundation

Research and support to families living with Norrie Disease.

Retina UK

Practical and emotional support for anyone affected by inherited progressive sight loss.

Royal National Institute of Blind People (RNIB)

Practical and emotional support to blind and partially sighted people, their families and carers.

Royal Society for Blind Children

Support, learning and development opportunities for blind and partially sighted children and young people in England and Wales.


Practical information and emotional support for disabled people.

The Seashell Trust

Support creating strategies, targets and individual programmes for children and young adults with complex needs, their families and carers.


Health, wellbeing, social care and advocacy support for Deaf people.

Stargardts Connected

Support community for those affected by Stargardt’s disease.

Together for Short Lives

Help or advice for anyone caring for a child with a serious illness.

Usher Kids UK

Information and support for children, young people and their families living with Usher syndrome.


Activities and grants for young people who are visually impaired.

Young Minds

Getting young people access to the right mental health support.

Zellweger UK

Grants, equipment, support and practical advice for people with Zellweger Spectrum Disorder.