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.
PKD Charity
Founded in 2000, we’re the first and only UK charity solely dedicated to improving the lives of an estimated 70,000 individuals and their families affected by polycystic kidney disease (PKD) in the UK. PKD is a range of life-threatening inherited conditions that can cause kidney failure and affect other organs in the body such as the liver, brain, heart and bowels. Most people with PKD live with an uncertain prognosis, intermittent pain and infections, and then have to undergo life-saving dialysis or transplant in their 50s. A few babies have a rare form of PKD which results in death during pregnancy or shortly after birth; the surviving children often have to have either a kidney or liver transplant before the age of 10. We provide reliable, accredited information, advice and personalised support. We raise awareness of the burden of PKD, both clinical and psychosocial. We fund research aimed at understanding more about PKD and the discovery of therapies that will improve quality and longevity of life.
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.
Myeloma UK
Myeloma UK is a UK-registered charity that funds research into myeloma, campaigns for access to treatments, and provides tailored information and support services for people affected by myeloma and their families. They operate a national infoline, peer support and community services, and work with healthcare professionals to improve care and treatment options.
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.
GIST Cancer UK
GIST Cancer UK is a registered charity in England and Wales (1129219). It provides confidential support for people living with GIST cancer and their loved ones. The organization offers various resources including publications, support groups, helpline, and patient support activities. It collaborates with GIST specialists and has a Medical Advisory Board. The organization is involved in patient advocacy, education, and research support. It maintains a website with information on treatment, side effects, and patient stories. The physical address is 3 Phillips Grove, Yatton Keynell, Chippenham, Wiltshire N14 7FA. Contact email: admin@gistcancer.org.uk. Phone: 0300 400 0000. It is active on social media platforms including Facebook, YouTube, Instagram, LinkedIn, and Twitter.
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.
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.
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