Find Your Patient Support Community
Discover support groups and communities where people share experiences, answer questions, and help each other navigate life with your condition.
Why PatientGroups.ai?
Verified Communities
We vet every organization to ensure you find safe, legitimate support networks and advocacy groups.
Global Reach
Access support groups from around the world, or find local communities near you that speak your language.
Patient-Centric
Built with patients in mind, prioritizing your privacy, ease of use, and meaningful connections.
How It Works
Finding the right support group is simple. We've made it easy for you.
Search Your Condition
Enter your health condition or diagnosis. Our smart search instantly finds relevant support organizations.
Explore Communities
Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
Connect & Get Support
Reach out directly to join communities, access resources, or get involved with groups that feel right for you.
Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
ALK Positive
ALK Positive Lung Cancer (UK) is a registered charity (1181171) established by patients, their families and friends. We are a community from different backgrounds and walks of life - each with our own individual story. Established in 2018, our purpose is to extend the overall survival and quality of life of ALK-positive lung cancer patients across the UK.
Arbeitskreis der Pankreatektomierten e. V.
The Arbeitskreis der Pankreatektomierten e. V. (AdP) is a self-help organization founded in 1976, dedicated to supporting patients with pancreatic diseases, especially pancreatic cancer. It aims to promote health and rehabilitation for those who have undergone partial or total pancreatectomy, as well as non-operated pancreatic disease patients. The organization provides current information, facilitates experience exchange, and conducts educational work. It has over 1,550 members and collaborates with medical professionals and organizations. The AdP offers support for diagnosis, therapy, and follow-up, and advocates for early detection and research in pancreatic diseases. It is based in Bonn, Germany, and is supported by the German Cancer Aid. The Arbeitskreis der Pankreatektomierten e. V., also known as ADP e.V., is a patient self-help organization based in Bonn, Germany. It focuses on supporting individuals who have undergone pancreatic surgery, providing resources, advocacy, and community support. The organization offers informational documents, support networks, and educational materials for patients and their families. It engages in activities such as maintaining a forum, hotline, and distributing downloadable resources. The ADP e.V. collaborates with medical professionals and other organizations to improve patient care and awareness of pancreatic diseases. Its activities include advocacy campaigns, patient education initiatives, and supporting research collaborations. The organization is committed to empowering patients through information and community engagement, aiming to improve quality of life and treatment outcomes for those affected by pancreatic conditions.
Pancreatic Cancer Action
What we do: Early diagnosis Subscribe Taking Action in Scotland The team at Pancreatic Cancer Action Current vacancies Contact Us Support from Trusts and Foundations Financial information Your privacy About Pancreatic Cancer Action We are the only UK charity that specifically focuses on improving pancreatic cancer survival rates through early diagnosis in everything we do. We raise awareness of the symptoms and risk factors of pancreatic cancer across the year. Join us by raising awareness of pancreatic cancer and by sharing your story! Founded by a pancreatic cancer survivor, Ali Stunt, who proves that survival is possible, Pancreatic Cancer Action’s vision is a day when everyone is diagnosed early and survives pancreatic cancer. Quite simply, we know that pancreatic cancer can be detected early, and as long as we are here and continue to be supported, we will do all we can do to make sure this happens more and more.
Childhood Tumour Trust
Childhood Tumour Trust is a growing charity whose aim is to bring children, young people and their families affected by Neurofibromatosis type 1 (NF1) together, (be it virtually at the moment), provide online parental support, campaign for better care & earlier diagnosis and to liaise with schools over special educational support.
Cystinosis Foundation UK
The Cystinosis Foundation UK aims to: Provide support. We aim to provide support to all diagnosed with cystinosis, their families and relatives. Provide information. We shall provide relevant, accessable and up to date information about the disorder, as well as advice on specialist sources of help for new symptoms developing in patients. Publish newsletters. Up to date newsletters containing relevant information for patients and supporters will be produced regularly. Organise or participate in conferences relevant to cystinosis. We aim to publicise cystinosis to the medical profession (particularly paediatric consultants) so that those born with cystinosis are identified as soon as possible. Support research into the treatment of cystinosis. Work with cystinosis related charities worldwide to help co-ordinate research support, maintain awareness of new treatments and seek to understand more about metabolic disorders in general.
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.
PatientGroups.co Podcast
Conversations with leaders, founders, and advocates driving change in the patient advocacy ecosystem.
Patient Group Spotlight: The Swallows with Chris Curtis
Featuring The Swallows
Chris Curtis shares his head and neck cancer journey, the mission behind The Swallows, and why patient-led support and access must improve.
Patient Group Spotlight: Burning Nights CRPS Support with Victoria Abbott-Fleming
Featuring Burning Nights CRPS Support
Victoria Abbott-Fleming shares her CRPS journey, the mission behind Burning Nights, and why patient voices must shape treatment and policy.
Patient Group Spotlight: The MVA Society & The Ultra-Rare Journey
Featuring MVA Society
A deep dive into the challenges and triumphs of Mosaic Variegated Aneuploidy advocacy with founder Jonathan Bracey.
Start Your Journey
Take the first step toward connection and support. Search for patient groups that match your needs today.
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