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Discover support groups and communities where people share experiences, answer questions, and help each other navigate life with your condition.
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Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
Bowel Research UK
Bowel Research UK is funding life-changing research into bowel cancer and other bowel diseases. Every year over 16,000 people die from bowel cancer in the UK and over a million suffer from bowel disease. By researching cutting edge treatments and investing in the best science, we’re saving and improving people’s lives Bowel Research UK was founded in 2020 following a merger between two well-respected charities: Bowel & Cancer Research and Bowel Disease Research Foundation (BDRF). We’re the UK’s leading specialist bowel cancer and bowel disease research charity and our research is saving and improving lives.
Chordoma UK
Over the last few years, Professor Flanagan’s research team and colleagues have taken tumours from patients treated at RNOH (with their consent and ethical approval), and 5 chordoma cell lines have been established from these tumours. 3 other cell lines have been generously donated from other researchers. This means that for the first time, a reasonable number of cell lines are available to screen against a large number of drugs / compounds (1000-2000), some of which are already used in the treatment of other tumours, and some of which are in development. By studying the effect of 100s of drugs on the chordoma cell lines we should be able to identify what induces the expression of brachyury. If can identify this/these, we have other potential targets to which drugs can be developed. We will also investigate if we can ‘silence’ brachyury in the chordoma cells using a virus. Research using these cell lines is has recently commenced and it is hoped that the outcome of this work will have an impact on the way all chordoma patients are treated worldwide.
Osteogenesis Imperfecta Foundation
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support. The Osteogenesis Imperfecta Foundation, Inc., is a registered 501(c)(3) non-profit organization. Tax ID: 23-7076021. Information on this website may be reproduced provided a full citation of the source is given.
European Cancer Patient Coalition
The European Cancer Patient Coalition (ECPC) is a patient-led organization dedicated to representing and advocating for cancer patients across Europe. Its core activities include policy advocacy, research support, patient education, and promoting access to quality cancer care. ECPC engages in policy development, collaborates with European institutions, and runs various campaigns to improve cancer outcomes. The organization also provides resources and support to patients and caregivers, and actively participates in European health initiatives and research projects. ECPC aims to empower patients, influence health policy, and ensure that patient perspectives are integrated into cancer care and research.
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).
PIP UK
There are many children born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community. At PIP-UK we want to change this situation and make sure people get access to the right information for them, at the right time! Our blog has videos on all sorts of things like how to tie shoelaces. There are stories which demonstrate that Poland Syndrome should not hold you back from anything!
The Power of Community
Navigating a health condition is easier when you have the right support. Here's what you can find.
Shared Experiences
Connect with people who truly understand what you're going through. Share your story in a safe, supportive environment.
Practical Information
Get real-world advice about managing your condition, navigating healthcare, and finding resources that actually help.
Emotional Support
Find comfort in a community that cares. Whether you need to vent, celebrate, or just feel heard, we're here.
Advocacy & Awareness
Many groups work to raise awareness, fund research, and improve care. Your voice can make a difference.
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