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.
Acute Leukemia Advocates Network (ALAN)
The [Acute Leukemia Advocates Network](https://acuteleuk.org/wp-content/uploads/2022/12/flyer_alan.pdf) (ALAN) is an independent global network of patient organisations, dedicated to changing outcomes of patients with acute leukemias by strengthening patient advocacy in that area. We aim to maximise the capacity of members within the network to allow us, together, to deliver tailored services to acute leukemia patients and carers on the national level. All whilst joining forces between organisations on the policy and research level across countries. ALAN is hosted under the umbrella of the [Leukemia Patient Advocates Foundation](https://www.lepaf.org/) (LePAF), a patient-led non-profit foundation based in Switzerland. As a foundation we connect leukemia patient organizations on all continents to strengthen advocacy work. The mission is to improve the lives and survival of patients affected by leukemia as well as their relatives by supporting leaders in providing help and support. ## OUR AIMS - Develop patient information and specific support for patients with acute leukemias and their carers in all countries - Strengthen patient organisations by sharing best practices and providing toolkits in patient advocacy - Create awareness about acute leukemias and how to better support leukemia patients - Advocate for better treatment, care & access to healthcare services - Improve education for healthcare professionals serving leukemia patients - Collaborate with other initiatives and stakeholders with similar goals
MPS Society
The MPS Society is a UK-based charity dedicated to transforming lives through support, research, and awareness for individuals affected by MPS, Fabry, and related lysosomal diseases. It provides professional support, patient resources, advocacy, and funding for research into treatments and cures. The organization offers a range of support services including mental health, bereavement, and community support, and actively engages in research, clinical trials, and policy advocacy. It maintains a website with extensive resources, publishes reports and educational materials, and collaborates with healthcare professionals and research institutions. The Society aims to improve diagnosis, treatment, and quality of life for patients and families affected by these rare conditions.
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.
Cure For Claire West Midlands C.I.C.
We are a Community Interest Company that does exactly as it states, We benefit the community. Everything you see on this site has had hard work put into every part, we pay for the site and the upkeep ourselves, we produce all the information ourselves, we create all multimedia ourselves, we pay for continuous training ourselves.
Cure Mito Foundation
The Cure Mito Foundation is a patient-led advocacy organization focused on Leigh syndrome and other mitochondrial diseases. It unites the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures, operates the largest Leigh syndrome patient registry (400+ participants across 40+ countries), and provides resources and support to affected families worldwide.
Unique
The Rare Chromosome Disorder Support Group (Rare Chromo) is a UK-based charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. They provide information, support, and advocacy for affected individuals, their families, and professionals. The organization aims to raise awareness, promote research, and improve services related to rare genetic conditions. They organize events, webinars, and produce educational resources to enhance understanding and support for the community. Their activities include facilitating research collaborations, providing a helpline, and developing informational materials to empower affected families and raise public awareness. Unique is a small charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. It provides information guides, family resources, and promotes awareness through events and research collaborations. The organization offers free membership to families, professional membership for clinicians and researchers, and maintains a confidential offline database of affected members. Unique advocates for affected individuals, supports research, and works to improve understanding and management of rare genetic conditions. It also provides educational materials, support groups, and participates in policy and research initiatives. The organization is based in Surrey, UK, with a physical address at The Stables, Station Road West, Oxted, Surrey, RH8 9EE, and has a global membership.
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: 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.
Start Your Journey
Take the first step toward connection and support. Search for patient groups that match your needs today.
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