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.
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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.
HLRCC Foundation
The HLRCC Foundation, also known as the Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance, is a patient advocacy organization dedicated to supporting individuals affected by HLRCC. The organization provides educational resources, patient support services, and advocates for research and awareness of HLRCC. It operates primarily in the United States and collaborates with other organizations. The organization is involved in research, clinical trials, and policy advocacy to improve patient outcomes and awareness. The HLRCC Foundation is dedicated to providing up-to-date information on Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), also known as Reed’s Syndrome. It aims to educate patients, support families impacted by HLRCC, and assist clinicians with current research, screening, and management strategies. The foundation promotes awareness, genetic testing, and early detection of kidney cancer associated with HLRCC. It collaborates with related organizations, supports research initiatives, and offers resources such as handbooks, videos, and community support groups. The foundation emphasizes the importance of knowledge, screening, and early intervention to improve patient outcomes.
Breakthrough Cancer Research
People believe that the worst day they or a loved one will have is hearing a cancer diagnosis. However, this is not the worst day. The worst day is when the doctor tells them there is no hope. They have tried everything. There is nothing more they can do. The cure for their cancer does not exist. Breakthrough Cancer Research (Breakthrough) is working hard to make sure our family, friends and communities across Ireland have access to the best treatments for cancer and never have to hear the words, there is no hope. Breakthrough Cancer Research is an Irish medical research charity focused on cancer. We work to significantly impact the number of children and adults who can survive this disease. We invest in world-class research in Ireland to impact the quality of life for people with cancer and save lives. We are particularly focused on improving outcomes for those cancers, which are poorly served by current treatment options. Our focus is on: Funding world-class cancer research into poor prognosis cancers, which are poorly served by current treatment options Facilitating collaboration between scientists and clinicians across Ireland and Internationally Accelerating the translation of lab discoveries into new effective treatments for people with cancer.
Bardet-Biedl Syndrome UK
Bardet-Biedl Syndrome UK (BBS UK) is a registered charity established in 1993, supporting individuals with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organization represented by adults with BBS and parents of children with BBS. The organization's aims include preserving and protecting health, promoting welfare, and advancing education about BBS. BBS UK supports over 700 people diagnosed with BBS, along with their families and professionals involved in care and support. The organization offers various programs including advice services, clinics, conferences, support groups, and educational resources. It also engages in advocacy, research, and policy activities to improve health outcomes and understanding of BBS. Bardet-Biedl Syndrome UK (BBS UK) is a registered charity established in 1993, supporting individuals with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organization represented by adults with BBS and parents of children with BBS. The organization's aims include preserving and protecting health, promoting welfare, advancing education about BBS, supporting over 700 people diagnosed with BBS, and fostering understanding, confidence, independence, self-advocacy, and social connections. BBS UK offers various programs such as advice services, clinics, conferences, support groups, educational booklets, newsletters, and fundraising activities. The organization also engages in advocacy, research, and policy work, maintains a website with extensive resources, and has a team of officers, trustees, and staff dedicated to its mission.
Ataxia and Me
A non-profit organisation founded by a patient, and run by patients, helping to maximise the patient voice within the medical, health and pharma community
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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