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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
OGsupport.uk
<h1>Support Group for Oesophageal and Gastric Patients</h1> <p>We are a patient support group for Oesophageal-Gastric cancer patients, running online and face-to-face support groups.</p> <p>Please contact the local organiser for details.</p> <h2>Location and Meetings</h2> <p>Guildford - In-person meetings are held at The Holiday Inn, Egerton Road, Guildford</p> <h3>Who Can Attend?</h3> <ul> <li>Current and former oesophageal or stomach cancer patients</li> <li>Their carers</li> <li>Loved ones</li> </ul>
Action for XP
Action for XP is a UK-registered charity focused on Xeroderma pigmentosum (XP). The organization provides patient and family support, awareness, education, resources, and advocacy related to XP. It offers project-based initiatives and several support and information hubs to assist people affected by XP, including Project Breakaway and Little Ted, as well as services such as Supporting You, the Action Advice Hub, and the Schools Hub. The charity aims to connect the XP community, raise awareness, share XP-related information, and provide accessible resources and outreach through its website and programs. Headquarters are listed in Aberdeenshire, United Kingdom, with charity registration details noted (Charity No SC045465). Action for XP is a charity dedicated to supporting individuals and families affected by Xeroderma Pigmentosum (XP). The organization operates across the UK and internationally, providing free services such as UV protection guidance, protective equipment, counselling, and family support. They organize community events, awareness campaigns, and collaborate with medical professionals and industry partners to advance research and improve quality of life for those with XP. The charity also engages in educational initiatives, advocacy, and fundraising activities to sustain and expand their support network. They have a strong focus on patient-centered care, education, and raising awareness about XP and related rare genetic conditions.
AkaliAZO
The Group of Volunteers against Cancer - EmbraceZO was founded in 1976 with headquarters in Piraeus. In 46 years of action and contribution, AgaliaZO Group supports cancer patients. OEKK-AgaliaZO is managed by an eleven-member Board of Directors, whose elected members are either patients or have experience with the disease. The Group consists of members and volunteers. At the same time, to achieve its work, it is supported by professionals in the field of communication, psychological support, management of accounting and financial issues, as well as secretarial support. In addition, it collaborates with experienced and renowned Scientists of all specialties in the anti-cancer field, who constitute the Scientific Committee of the Group. OEKK-AkaliAZO has had a Branch in Heraklion, Crete since 2007 for the needs of the citizens of the region. Finally, it hosts and supports the Panhellenic Association of Laryngeectomists PAN.SY.LA since 1989.
Purple Our World
<p>The statistics around pancreatic cancer are heartbreaking, and quite frankly, frightening. At #PurpleOurWorld, our aim is to get the world talking about pancreatic cancer and ultimately change these horrible numbers. We want to turn our world purple!</p><p>The statistics around pancreatic cancer are heartbreaking. At #PurpleOurWorld, our aim is to get the world talking about pancreatic cancer and ultimately change these horrible numbers. We want to turn our world purple!</p> Purple Our World is a patient advocacy organization dedicated to raising awareness and funding for pancreatic cancer research. Founded in 2014, it aims to increase public understanding of pancreatic cancer symptoms, promote early detection, and support medical research initiatives. The organization collaborates with charities, government bodies, and corporate partners to amplify its impact. It organizes awareness campaigns, such as lighting landmarks purple, and engages with the community through social media, ambassador programs, and events. Purple Our World also advocates for policy change and increased research funding to improve survival rates and patient outcomes.
Action Duchenne
UK charity supporting people with Duchenne muscular dystrophy and their families.
Its On The Ball
It's on the Ball is a UK-based registered charity (charity number 1155510) focused on testicular cancer awareness, information, support, and fundraising. The organization provides contact channels for enquiries and support (email info@itsontheball.org and phone 01603 511707) and operates from Norwich, Norfolk, United Kingdom. Core activities include awareness campaigns, patient support resources, fundraising for change, volunteering opportunities, and storytelling/community engagement through its site sections (Testicular Cancer resources, Get Involved, Stories, News). It's On The Ball is a UK-based registered charity (charity number 1155510) focused on testicular cancer awareness, education, and patient support. The organization describes itself as working to raise awareness of testicular cancer and the importance of monthly self-checks, deliver awareness talks to schools, colleges, businesses and organisations around East Anglia, provide patient education resources (leaflets and information), and fundraise to support patients through awareness campaigns, support packs, and grants. Core activities include awareness campaigns (Awareness), patient support (Support), and fundraising initiatives (Fundraising). The site emphasizes patient advocacy through stories, support resources, and community events, including BeerPush fundraising campaigns and other community events. The organization invites donations, volunteers, and corporate support and maintains an active newsletter and events calendar. The content reflects ongoing engagement with the public and communities to improve early detection and patient support related to testicular cancer.
The Power of Community
Navigating a health condition is easier when you have the right support. Here's what you can find.
Shared Experiences
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Practical Information
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Emotional Support
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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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