Below are some useful UK-based sites that provide information and support. For international organisations; please see the links to sister organisations.
This website provides information and advice about the causes and management of back pain. The charity aims to reduce the burden of back pain by providing information and education to all people and organisations affected by back pain and to fund scientific research into the causes, prevention and management of back pain.
Pain Concern is a UK-based chronic pain charity working to help, support ,and inform people living with pain and and those who care for them. Pain Concern provides information on managing pain and also has a forum, helpine, and podcast.
The Chartered Society of Physiotherapy
The CSP website has a Physion2U function so you can find a chartered physiotherapist in your area.
Living with a disability
Disabled Living Foundation (DLF)
DLF is a national charity providing impartial advice, information and training on independent living. They can help you answer questions on the equipment available that might help you remain independent. They have a helpline and information sheets to help you find the equipment you need, as well as links to ‘Living made easy’, which compares prices of different pieces of equipment and where to get them.
Disability Rights UK
Disability Rights UK aims to strengthen the voice of disabled people to make their rights real, and to empower disabled people by providing information on a range of things from benefits and appealing decisions to careers and independent living. They run helplines so that you can talk to someone with your questions about disability rights.
Strongbones Children’s Charitable Trust
This charity offers grants towards medical equipment, wheelchairs, computers/software, respite breaks at their holiday homes, sensory equipment, clothes, and social activities in order to alleviate the pain, suffering and financial burden of families who have children suffering from conditions of the bone.
Syndromes & conditions
Osteogenesis Imperfecta (OI) is a genetic bone disorder characterised by fragile bones that break easily. It is also known as brittle bone disease. A person is born with this disorder and is affected throughout his or her lifetime. The Brittle Bone Society was established in 1968 to support the needs of people born with OI and their families in the UK and Republic of Ireland.
Founded in 1984, the Marfan Association (UK) sets out to provide support for people affected by Marfan Syndrome, as well as increase awareness amongst the medical profession. You may also find that the Marfan Trust website has useful information on Marfan Syndrome.
Information, advice, and support for people affected by Neurofibromatosis.
Rett UK offers professional advice and support for families affected by Rett syndrome. They provide a helpline and information sheets.
The British Polio Fellowship is a charity dedicated to helping, supporting and empowering approximately 120,000 people in the UK living with the late effects of Polio and Post Polio Syndrome (PPS), a neurological condition. It provides information, welfare and support to those living with the effects to enable all to live full independent and integrated lives.
British Scoliosis Society
The British Scoliosis Society represents surgeons, allied health professionals, and researchers interested in the nature of and treatment of scoliosis and complex spine disorders.
BACP Find a Therapist
This directory is provided by the British Association for Counselling and Psychotherapy (BACP), a membership organisation and registered charity that sets standards for therapeutic practice and provides information for therapists, clients of therapy, and the general public.
In Wales, there are over 30,000 people affected by Scoliosis.
SWS Cymru aims to:
Support through the medium of Welsh and English patients and families with scoliosis, raising awareness and better understanding of this condition and the difficulties that arise with it, through education and sharing information
HMSA – Hypermobility Syndromes Association
The HMSA is the only charity offering both practical support and Information Standards Accredited health and care information to people who have a hypermobility syndrome. or who are involved in the care of someone with any of the hypermobility syndromes, including Hypermobility Spectrum Disorder (HSD), Joint Hypermobility Syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Sticklers and Osteogenesis Imperfecta.
PLEASE NOTE that SAUK can take no responsibility for any information contained in external websites. Inclusion of a link here is purely a service to members and does not represent approval of the site’s contents.