Helping patients find information when they are discovering their disease
Join our members in finding the resources and support you need to navigate your health journey.
Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Max Appeal
Resource Library page for Max Appeal. Provides access to all of Max Appeal's literature, professional papers, and useful web pages and links around the world. Encourages participation in or understanding current research into 22q; directs visitors to Library, Research, and Useful Links sections to learn about 22q and related resources.
CDH UK
CDH UK is a registered charity in England and Wales (no. 1106065) and Scotland (no. SC042410). It focuses on supporting research and providing support for individuals affected by Congenital Diaphragmatic Hernia (CDH). The organization offers patient support, advocacy, and research funding to improve outcomes and awareness of CDH. It engages in public education, supports families, and collaborates with medical professionals to advance treatment and understanding of CDH. CDH UK is a registered charity focused on Congenital Diaphragmatic Hernia (CDH). The organization provides comprehensive information about CDH, including diagnosis, what to expect during pregnancy and birth, post-natal care, surgical repair, possible outcomes, and emotional support. They offer various support services such as counselling, practical help (Home 2 Hospital, Help 4 Home, Help 4 Holidays), ongoing support, and resources for transition of care. CDH UK is actively involved in research, collaborating with researchers, PhD students, and healthcare professionals on research programmes and conducting in-house studies and surveys. They also publish research articles and provide educational materials like information booklets, magazines, and explainer graphics for patients, families, and carers. The charity is supported by patrons and a medical advisory panel, and engages in fundraising activities to support its mission.
MPS Society
The MPS Society is a UK-based charity dedicated to transforming lives through support, research, and awareness for individuals affected by MPS, Fabry, and related lysosomal diseases. It provides professional support, patient resources, advocacy, and funding for research into treatments and cures. The organization offers a range of support services including mental health, bereavement, and community support, and actively engages in research, clinical trials, and policy advocacy. It maintains a website with extensive resources, publishes reports and educational materials, and collaborates with healthcare professionals and research institutions. The Society aims to improve diagnosis, treatment, and quality of life for patients and families affected by these rare conditions.
Childhood Eye Cancer Trust
CHECT Publications page describing the organization’s publishing activity, including InFocus newsletter, the Impact Report, and the Annual Report & Accounts, and directing visitors to latest news and contact information. The page confirms CHECT as the source of these publications and provides a contact address (The Royal London Hospital, Whitechapel Rd, London) and general contact details (info@chect.org.uk, 0207 377 5578). The site is the CHECT main site (chect.org.uk).
Help 4 HD International
Help 4 HD International is an international patient advocacy organization focused on Huntington's disease. The website presents a mission, resources, and programs to support HD patients and families. It hosts a diverse range of events each year, including Awareness Days, symposia, walks, Casino Night Out, and Cocktails for a Cure, and provides access to resources via a Resource Database. The site also features The Huntington's Post and Help 4 HD Live, indicating educational and community-facing content and events to inform and engage patients, caregivers, and professionals. Help 4 HD International is a nonprofit organization dedicated to educating the world about Huntington’s disease. It provides resources, support, and advocacy for patients, caregivers, and families affected by HD. The organization offers various programs including resource databases, educational materials, support groups, and advocacy campaigns. It engages in policy work, clinical trial support, and research collaborations. Help 4 HD also produces publications, reports, and educational brochures to raise awareness and provide information about Huntington’s disease. The organization is involved in community outreach, law enforcement awareness, and caregiver support initiatives. It maintains a website with social media presence on YouTube, Facebook, Instagram, and Twitter. It was founded in 2010 and operates internationally, with a focus on education, support, and advocacy.
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.