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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Acrodysostosis Support and Research
Acrodysostosis Support and Research is a charitable organization that provides educational resources and information about acrodysostosis for both patients and healthcare professionals. The Resources section offers diagnostic and management leaflets for professionals, an accessible What is acrodysostosis? guide in web and medical formats, information on disorders related to acrodysostosis, imagery illustrating distinctive features, and a hub for news, stories, and latest research. The site also links to team, blog, and fundraising content, indicating ongoing community involvement and support for research and awareness.
Stiff Person Syndrome Support and Charity
<p>This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may also be of interest to caregivers, care professionals, researchers (together with advocates for the condition) and the general public.</p><p>------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------</p> Stiff Person Syndrome Support Group and Charity, founded in 1998 by Liz Blows, is a UK-based not-for-profit organization dedicated to supporting individuals with Stiff Person Syndrome (SPS). The organization provides information, advocacy, support services, and promotes research into SPS. It aims to raise awareness of SPS, offer patient support, and facilitate research collaborations. The charity operates in the UK and Ireland, with a physical address at 75 Normandy Avenue, Beverley, East Yorkshire, HU17 8PF. It has a charity registration number 1099206. The organization engages in various activities including hosting conferences, supporting patient stories, and maintaining an online presence through social media platforms such as Facebook, Twitter, Instagram, and LinkedIn. The organization also provides educational resources, supports research publications, and collaborates with medical and research institutions. Key personnel include Liz Blows (Chair). The charity is actively involved in policy advocacy, research funding, and community engagement to improve the lives of SPS patients.
World Pancreatic Cancer Coalition
Action Duchenne
Action Duchenne is a patient advocacy group dedicated to supporting individuals and families affected by Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy. The organization provides comprehensive support services, educational resources, and advocacy initiatives. Key activities include running a DMD Registry, offering family support programs (e.g., for mums, dads, grandparents, siblings, and age-specific groups for children and young adults), providing counselling, and addressing end-of-life and bereavement needs. They host an Annual International Conference to empower the Duchenne community through education, foster inclusivity, and drive comprehensive support, bringing together patients, families, clinicians, healthcare professionals, and industry representatives. Action Duchenne also disseminates news on Duchenne research and clinical developments, engages in policy advocacy, and offers educational content on Duchenne science and care.
Mind Over Cancer
Mind Over Cancer is a charity that supports the mental health of young people diagnosed with cancer between the ages of 0 and 29, as well as their families and support networks. It aims to promote and protect mental health by providing or assisting in the provision of counselling services and mental health support programs. The organization is made up of experts in cancer care and mental health who identified a lack of mental health provisions for young cancer patients. It offers mental health support, counselling, drop-in services, support programs, and online support groups across East Anglia. The charity also engages in advocacy, fundraising, and community support activities. It has a registered charity number 1192034 and is committed to supporting young people and their families through their cancer journey.
Fragile Society
The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At that time there were no facilities to support and inform families about any aspect of Fragile X. The charity has since grown to consist of a team of dedicated employees and volunteers, supporting thousands of individuals and families.