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.
Schinzel-Giedion Syndrome Foundation
The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our foundation has been created to represent children with SGS and their families living all around the world. The Schinzel-Giedion Syndrome Foundation is a UK registered charity established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). It aims to represent children with SGS and their families worldwide. The foundation is involved in research, advocacy, and support activities related to SGS. It collaborates with medical and scientific advisory boards, and maintains a registry and resources for families and professionals. The foundation also engages in public education, policy advocacy, and fundraising efforts. It provides educational materials, supports families, and promotes research into SGS, including genetic, clinical, and therapeutic studies. The foundation's activities include organizing conferences, publishing research, and fostering collaborations among researchers, clinicians, and families.
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.
Behçet's UK
Behçet's UK is a patient advocacy organization dedicated to supporting individuals affected by Behçet’s disease. They provide information, support services, and promote research to improve diagnosis and treatment. The organization operates a helpline, offers patient education resources, and runs support groups and events across the UK. They are involved in advocacy activities to raise awareness and influence policy related to Behçet’s disease. The organization maintains a website with comprehensive information and links to social media platforms. They also coordinate with national centers of excellence for specialized care. Behçet's UK is a charity dedicated to supporting individuals affected by Behçet's disease, a rare and complex autoimmune condition. The organization provides patient support, promotes research, and raises awareness about Behçet's disease. It offers various programs including support groups, educational resources, and advocacy activities. Behçet's UK collaborates with medical professionals and research institutions to improve patient care and outcomes. The organization also hosts conferences, surveys, and community events to engage with patients and healthcare providers. It maintains a helpline, social media presence, and partnerships with other health and advocacy groups. The charity is committed to advancing understanding and treatment of Behçet's disease through research and policy influence.
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Jordan's Guardian Angels
Jordan's Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above. It is dedicated to supporting research and providing resources for families affected by Jordan's Syndrome, including research updates, family support, advocacy, and community building. The organization also collaborates with research institutions and participates in advocacy efforts to promote awareness and policy change for rare diseases.
Action Bladder Cancer UK
Action Bladder Cancer UK (ABC UK) is a charity organization dedicated to raising awareness of bladder cancer, improving early diagnosis, and supporting research and patient support activities. They provide patient stories, educational resources, and support groups. The organization is involved in advocacy, research funding, and clinical trials. They operate primarily in the UK, with a physical address at 6 Trull Farm Buildings, Tetbury, Gloucestershire, GL8 8SQ. The charity was established to address the late detection of bladder cancer and aims to improve survival rates. They have a registered charity number 1164374. The organization engages in policy advocacy, supports patient education, and collaborates with healthcare professionals and researchers. Action Bladder Cancer UK (ABC UK) is a charity organization dedicated to supporting patients with bladder cancer, raising awareness, funding research, and providing educational resources. They operate primarily within the UK, with activities including patient support groups, research grants, educational programs, and advocacy campaigns. The organization is involved in clinical trial support, research collaborations, and policy engagement. They maintain a website with resources for patients and professionals, and have active social media presence on Twitter and Facebook. The charity was established in 2015 and is registered under charity number 1164374. They offer various support services, educational materials, and participate in policy discussions related to bladder cancer.
Anthony Nolan
Charity focused on recruiting volunteer bone marrow/stem cell donors, funding research into cell therapies, running fundraising events (marathons, treks, cycles), and matching donors with patients in urgent need of transplants. Emphasizes donor register sign-up via swab and public donation appeals.
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.
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