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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Verified Communities
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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Finding the right support group is simple. We've made it easy for you.
Search Your Condition
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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.
Chromosome 18 Europe
Chromosome 18 Registry and Research Society (Europe) is a charitable organization (Charity Number SC040399) associated with the Chromosome 18 Registry and Research Society. It facilitates a European community for families, friends, and members affected by Chromosome 18-related conditions, coordinating governance through a Management Committee and communicating developments ahead of its Annual General Meeting. The event described on this page is an informal, family-friendly gathering at the Glasgow Science Centre intended to connect attendees, share experiences, and discuss the organisation’s future direction, with feedback invited ahead of the next AGM. The site notes an international component, including a visit by several families from the US Chromosome 18 Registry and Research Society to Scotland.
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.
Wolfram Syndrome UK
Wolfram Syndrome UK is a charity dedicated to supporting individuals affected by Wolfram Syndrome, raising awareness, funding research, and providing support and resources for patients and families. The organization works closely with hospitals, clinicians, and researchers to advance understanding and treatment of Wolfram Syndrome. It offers patient support programs, educational resources, and hosts conferences and clinical trials updates. The charity also advocates for policy change and collaborates with international organizations to improve care and research efforts.
LHON Society
The LHON Society is a patient-led support group for LHON, a mitochondrial disease affecting the retina and optic nerve, causing loss of vision. It provides emotional support, educational resources, support groups, community activities, and research updates. The organization offers counselling services through RNIB and Macular Society, and maintains a network of support groups and community programs. It is registered with the Charity Commission for England & Wales (number 1157206). The society also engages in research activities, clinical trials, and partnerships with biotech and pharmaceutical companies. It has a presence on social media platforms including Facebook, Twitter, and LinkedIn.
Neuromuscular Disease Foundation
The Neuromuscular Disease Foundation (NDF) is a nonprofit organization dedicated to supporting research, education, and advocacy for neuromuscular diseases, including GNE Myopathy. It provides patient resources, support groups, educational programs, and funds research initiatives. NDF aims to improve the quality of life for individuals affected by neuromuscular conditions through community engagement, awareness campaigns, and collaboration with medical and research institutions. The foundation also offers assistive devices, patient registries, and participates in clinical research and policy advocacy to advance treatment options and patient care.
Childhood Eye Cancer Trust
CHECT Publications page describing the organization’s publishing activity, including InFocus newsletter, the Impact Report, and the Annual Report & Accounts, and directing visitors to latest news and contact information. The page confirms CHECT as the source of these publications and provides a contact address (The Royal London Hospital, Whitechapel Rd, London) and general contact details (info@chect.org.uk, 0207 377 5578). The site is the CHECT main site (chect.org.uk).
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.
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