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.
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.
Barth Syndrome Foundation
The Barth Syndrome Foundation (BSF) is the only organization dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. BSF provides vital information, credible resources, and supports research efforts to improve diagnosis, treatment, and quality of life for individuals with Barth syndrome. The foundation also advocates for regulatory approval of therapies, collaborates with healthcare providers and researchers, and offers community support and educational programs. The Barth Syndrome Foundation (BSF) is dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. The foundation provides vital information, credible resources, and supports research initiatives. It engages in advocacy activities, offers patient and clinician resources, and fosters community support. The organization is involved in clinical trials, research funding, and policy advocacy. It maintains a comprehensive website with sections on research, family resources, diagnosis, and community engagement. The foundation also collaborates with international affiliates, partners, and medical advisory boards. It is committed to improving diagnosis, treatment, and quality of life for individuals with Barth syndrome and their families.
Independent Cancer Patients' Voice
Independent Cancer Patients' Voice (ICPV) is a charity registered by the Charity Commission for England and Wales. It focuses on patient advocacy, support, and engagement in cancer research. The organization aims to involve patients in research design, policy, and clinical trials, providing a platform for patient voices to influence cancer research and treatment. ICPV organizes courses, conferences, and advocacy activities to empower patients and improve cancer care through active participation and collaboration with researchers and clinicians.
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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.
Baggy Trousers UK
<p>Baggy Trousers UK is a non-profit organisation saving lives by raising awareness of the signs and symptoms and providing vital support to those impacted by testicular cancer</p> Contact page for Baggy Trousers UK, a registered charity in England and Wales focused on Testicular Cancer Awareness. The site features a contact form, donation prompt, and social media channels. Charity No. 1160724. Baggy Trousers UK is a cancer charity based in the North West of England founded by Jack Broadley in 2014. Its aims are to (1) promote and protect the physical and mental health of sufferers of testicular cancer, (2) provide financial assistance, support, education and practical advice to those affected by testicular cancer, and (3) advance the education of the general public in all areas relating to testicular cancer. The organization delivers awareness talks and showcases awareness exhibitions/stands in public and corporate settings, distributing self-help materials (leaflets, posters and step-by-step checking cards). It provides financial and peer support to men directly affected by testicular cancer via telephone, email, social media and a monthly peer support group. Primary contact support includes a phone line and email for peer support, and the charity runs a monthly peer support group.
Mesothelioma UK
Mesothelioma UK is a patient advocacy group dedicated to supporting people with mesothelioma, an asbestos-related cancer. They provide information, support, help with benefits or compensation, and access to specialist nurses for mesothelioma patients and their families in the 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.
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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