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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We vet every organization to ensure you find safe, legitimate support networks and advocacy groups.
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Access support groups from around the world, or find local communities near you that speak your language.
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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.
Rare Disease UK
We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
Lasag
London Asbestos Support Awareness Group (LASAG) is a UK charity focused on asbestos-related information and support. The site provides information on asbestos diseases (via 'Asbestos Diseases'), benefits and compensation (including legal compensation under 'Legal Compensation'), referral services, 'Support Groups and Events', news and campaigns, fundraising, and 'Meet the team' information. Primary contact is support@lasag.org.uk; main website is https://www.lasag.org.uk. The charity is registered in England and Wales with charity number 1174543. The registered address is Farthings, Bridle Lane, Loudwater, Rickmansworth, Hertfordshire, WD3 4JQ. Phone line is 0808 278 2515.
Arbeitskreis der Pankreatektomierten e. V.
The Arbeitskreis der Pankreatektomierten e. V. (AdP) is a self-help organization founded in 1976, dedicated to supporting patients with pancreatic diseases, especially pancreatic cancer. It aims to promote health and rehabilitation for those who have undergone partial or total pancreatectomy, as well as non-operated pancreatic disease patients. The organization provides current information, facilitates experience exchange, and conducts educational work. It has over 1,550 members and collaborates with medical professionals and organizations. The AdP offers support for diagnosis, therapy, and follow-up, and advocates for early detection and research in pancreatic diseases. It is based in Bonn, Germany, and is supported by the German Cancer Aid. The Arbeitskreis der Pankreatektomierten e. V., also known as ADP e.V., is a patient self-help organization based in Bonn, Germany. It focuses on supporting individuals who have undergone pancreatic surgery, providing resources, advocacy, and community support. The organization offers informational documents, support networks, and educational materials for patients and their families. It engages in activities such as maintaining a forum, hotline, and distributing downloadable resources. The ADP e.V. collaborates with medical professionals and other organizations to improve patient care and awareness of pancreatic diseases. Its activities include advocacy campaigns, patient education initiatives, and supporting research collaborations. The organization is committed to empowering patients through information and community engagement, aiming to improve quality of life and treatment outcomes for those affected by pancreatic conditions.
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Cancer Support France
Cancer Support France is a patient advocacy organization dedicated to providing support, information, and advocacy for individuals affected by cancer in France. They offer a helpline, support groups, educational resources, and community activities to improve the quality of life for cancer patients and their families. The organization collaborates with healthcare providers, researchers, and other charities to promote cancer awareness, support research, and influence health policies. They operate nationwide across France, engaging in advocacy campaigns, patient education initiatives, and volunteer programs. Their services include emotional support, practical assistance, and information dissemination to empower patients and caregivers. Cancer Support France is a national organization dedicated to providing support, information, and advocacy for cancer patients and their families in France. It offers a range of support services, including support groups, educational resources, and community activities. The organization collaborates with international cancer organizations and participates in policy advocacy to improve cancer care and patient quality of life. It maintains a network of local associations across France, facilitating access to support and information at the regional level. The organization also engages in public awareness campaigns and provides resources for cancer prevention, early detection, and survivorship. Cancer Support France is committed to fostering a supportive community for those affected by cancer and promoting research and policy initiatives to advance cancer care.
Dravet Syndrome UK
Dravet Syndrome UK is a patient support organization dedicated to providing information, emotional support, and resources for families affected by Dravet Syndrome. They offer practical and emotional support, mental health support, resources and advice, financial grants, and support for families overseas. The organization also engages in research, advocacy, and professional collaboration to improve care and awareness of Dravet Syndrome. They maintain a website with extensive resources, including guides, leaflets, and information for healthcare professionals and families. The charity is based in Chesterfield, UK, with a charity number 1128289, and has a presence on social media platforms such as Twitter, Facebook, Instagram, LinkedIn, and YouTube.
Help 4 HD International
Help 4 HD International is an international patient advocacy organization focused on Huntington's disease. The website presents a mission, resources, and programs to support HD patients and families. It hosts a diverse range of events each year, including Awareness Days, symposia, walks, Casino Night Out, and Cocktails for a Cure, and provides access to resources via a Resource Database. The site also features The Huntington's Post and Help 4 HD Live, indicating educational and community-facing content and events to inform and engage patients, caregivers, and professionals. Help 4 HD International is a nonprofit organization dedicated to educating the world about Huntington’s disease. It provides resources, support, and advocacy for patients, caregivers, and families affected by HD. The organization offers various programs including resource databases, educational materials, support groups, and advocacy campaigns. It engages in policy work, clinical trial support, and research collaborations. Help 4 HD also produces publications, reports, and educational brochures to raise awareness and provide information about Huntington’s disease. The organization is involved in community outreach, law enforcement awareness, and caregiver support initiatives. It maintains a website with social media presence on YouTube, Facebook, Instagram, and Twitter. It was founded in 2010 and operates internationally, with a focus on education, support, and advocacy.
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.
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