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.
Cavernoma Society
The Cavernoma Society was set up in late 2018 and officially achieved its charity registration in July 2019. It has been created to support cavernoma patients, their families, carers, and friends, through the cavernoma journey. We're working towards a cure and better management for cavernoma, but in the meantime we can support you by offering guidance, reassurance, medical information, and counselling. We're member led, so we're constantly evolving our services and making sure we're delivering the best for you.
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.
Medics4RareDiseases Ltd
Medics4RareDiseases Ltd is a Charitable Incorporated Organisation (CIO) registered in England & Wales. It is a charitable organization focused on raising awareness and supporting rare disease communities. The organization is funded by donations and sponsorship, and it does not provide clinical services or medical referrals. Its activities include advocacy, awareness campaigns, and community engagement in the field of rare diseases.
Contact
We were founded in the 1970s by families of disabled children, who recognised that even if their child’s conditions were different, they shared a common experience – of being a family with a disabled child. They understood how important it is to support each other. A lot has changed since then but some things haven’t changed nearly enough. There is a desperate lack of services and support for the 620,000 parents in the UK who care for a disabled child. As a result, families face a huge range of challenges and many feel isolated and alone. Coping with extra financial costs and practical challenges can put an enormous strain on daily life, with families more likely to face emotional issues, stress and anxiety. We are here for all families with disabled children – supporting families, bringing families together and helping families take action for others. Our vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them.
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.
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
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: 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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