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.
Guts UK Charity
Guts UK is the national charity for the digestive system. They provide expert patient information and support for over 40 digestive conditions and symptoms affecting the gut, liver, and pancreas. They fund life-changing medical research into the whole digestive system, work to raise awareness, and educate people about digestive systems through campaigns and events.
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.
Asociacionalma
Asociación ALMA is a patient organization formed by patients and family members of patients with leukemia and other blood disorders. It aims to provide emotional and practical support to patients with leukemia and other blood pathologies not supported by other organizations. The organization offers various programs including patient education, emotional containment, legal advice, and emotional support. It seeks to empower patients through educational webinars, patient meetings, and support groups. The organization also advocates for patient rights, collaborates with sponsors and members, and maintains a focus on leukemia and related hematological conditions. It is based in Argentina and operates nationally, with a mission to support and empower blood disorder patients.
Dancing Eye Syndrome Support Trust
The Dancing Eye Syndrome Support Trust, established in 1997, provides mutual support and encouragement to parents of children diagnosed with Dancing Eye Syndrome (Opsoclonus-Myoclonus Syndrome). It offers a platform for parents to connect, share experiences, and access information through meetings and newsletters. The trust also produces educational resources for families and supports research and awareness efforts related to the condition. It arranges meetings for members, produces informational materials, and provides contact details for neurology specialists for adults with childhood-onset OMS. Providing support and information to families of children with Dancing Eye Syndrome. OMAS or Dancing Eye Syndrome is a rare autoimmune condition affecting young children, characterized by rapid eye movements, jerking movements, and loss of balance. Most children are diagnosed around 18 months, with a prevalence of 1 in 5 million children worldwide. The syndrome is often triggered by a neuroblastoma tumor or viral infection. Symptoms include opsoclonus, myoclonus, ataxia, speech difficulties, sleep problems, behavioral issues, hypotonia, and vomiting. Treatment involves immunotherapy, corticosteroids, IVIg, rituximab, and possibly surgery for tumors. The cause varies by age, with neuroblastoma in young children and idiopathic or viral causes in older children. The organization was established in 1997, providing support, raising awareness, and hosting conferences. Contact: support@dancingeyes.org.uk, Tel: 07746 129950. The trust is involved in fundraising, awareness campaigns, and community support.
Fundación Colombiana de Leucemia y Linfoma
Fundación Colombiana de Leucemia y Linfoma - Funcolombiana De Leucemia Linfoma en Bogotá. Centro de referencia en Colombia sobre leucemia y linfoma. La mejor opción en orientación y soporte para...
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
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