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.
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Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
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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.
CML Support
CML Support is a UK-based charity focused on chronic myeloid leukemia (CML). The site provides patient information, access to clinical trials, specialist centres, and an online community/forum. It organizes resources through sections such as Patient info, About us, and Organisations (a directory of organisations). The presence of a Facebook page indicates active patient/community engagement. The site menu suggests emphasis on diagnosis guidance, testing, treatments, available treatments, clinician-centre resources, and patient advocacy through its organisational and patient-information content. CML Support is a comprehensive patient support community for Chronic Myeloid Leukaemia (CML). It provides educational resources, patient information, clinical trials, specialist centres, and support networks. The organization aims to empower patients with knowledge about CML, facilitate access to treatments and clinical research, and offer emotional and peer support. It also engages in advocacy and collaborates with healthcare professionals to improve patient care. The site features articles, videos, templates, and a forum for community interaction. CML Support is committed to providing up-to-date, accurate information and fostering a supportive environment for individuals living with CML.
Grace Kelly Childhood Cancer Trust
The Grace Kelly Childhood Cancer Trust was founded in 2016 in memory of four-year-old Grace. We fund research into rare and aggressive childhood cancers, educate families and clinicians about the signs and symptoms of childhood cancer and produce information booklets to explain to parents and children about the treatments they are facing. Locally, we provide financial, practical, and emotional support to families through our support service. Giving families a listening ear at the time when they need it most. Because no family should fight childhood cancer alone.
Team Lopez Foundation
The Team Lopez Foundation was incorporated in memory of Alex Lopez who was tragically lost to pancreatic Cancer. Our mission to honour Alex’s legacy is to raise funds for Pancreatic Cancer Research. We have established with Sydney University the Alex Lopez PhD Scholarship in Pancreatic Cancer. The scholarship named in loving memory of Alex, plays a pivotal role in attracting talented PhD students from around the world to improve the survival rates of pancreatic cancer patients. Over the last 15 years, University of Sydney clinicians based in their teaching hospital on the Royal North Shore campus, have become leaders in treating pancreatic cancer. Patients treated by their team survive almost twice as long after diagnosis compared to the average Australian pancreatic cancer patient treated elsewhere. At the University of Sydney, as part of the Kolling Institute at the Royal North Shore Hospital, provides the research foundations that the team refine into best practice.
Hrvatska udruga leukemija i limfomi (HULL)
<p>The association works with the aim of helping patients suffering from hematological diseases, developing new research programs and treatment methods, and to this end undertakes the following activities:</p><ul><li>Organizes the treatment of patients suffering from leukemia, lymphoma, and related diseases.</li><li>Collects donations, and develops and implements programs to help patients suffering from leukemia, lymphoma, and related diseases.</li><li>Encourages new methods of treatment, and limits professional and financial assistance for these programs.</li><li>Supports programs to help patients and their families.</li><li>Supports research work in the field of etiology, therapy, and treatment of leukemia, lymphoma, and related hematological diseases.</li><li>Develops unrelated bone marrow transplantation programs in the Republic of Croatia.</li><li>Organizes seminars and consultations, and distributes information from these meetings to health and scientific institutions.</li></ul>
European Tuberous Sclerosis Complex Association
Established in 2012, ETSC is a federation of Tuberous Sclerosis Associations. ETSC believes in total “patient experience” and that interaction with all healthcare providers and relative agencies is paramount. Objectives • Increase knowledge and awareness on TSC • Promote implementation of European and International diagnostic criteria, surveillance and treatment guidelines • Stimulate research on TSC • Interest European and International organisations in the welfare of those with TSC and their families • Exchange information of mutual interest between associations. Aims • Total patient experience and interaction in each individual country with all healthcare providers and agencies • Uniting TSC Associations to ensure knowledge and surveillance on our rare disorder and orphan drugs are increased • Good working relationships with Pharma and the inclusion of representatives from National Organisations in information and education on Clinical trials and any new drugs being developed for use with our rare disease • Vigilance on protocols and new drugs
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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