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.
Project Sebastian
Project Sebastian is a patient advocacy organization that provides support groups, individualized therapies, education, and resources to families affected by rare diseases. Its mission centers on compassion, education, and advocacy, aiming to empower the rare disease community through group support meetings, counseling, and access to resources. The organization emphasizes building a network of professionals, scientists, educators, caregivers, and families, with the goal of funding vital projects and increasing awareness for rare diseases. It engages in ambassador initiatives, Rare Disease Day activities, and partnerships with charity organizations. Programs highlighted include caregiver and patient support, educational resources, and community events. The organization lists several charity partners and resources in its materials and maintains an online presence with a resources page, support groups, and fundraising efforts (donations). The main activity appears to be community-based support and education for all families affected by rare diseases, primarily operating from the United States (Valencia, California address).
Jeans for Genes
Jeans for Genes is the annual fundraising event for the genetic condition community. It organizes activities such as promoting fundraising events, providing educational materials, and supporting families affected by genetic conditions. The organization encourages participation through workplace, school, and community events, and offers resources like fundraising packs, wristbands, and promotional materials. It also engages with media and local press to raise awareness and supports fundraising through online shops, bank transfers, cheques, and digital platforms. The organization is involved in advocacy, education, and community support activities, aiming to fund research and support services for families affected by genetic conditions.
European Cancer Patient Coalition
The European Cancer Patient Coalition (ECPC) is a patient-led organization dedicated to representing and advocating for cancer patients across Europe. Its core activities include policy advocacy, research support, patient education, and promoting access to quality cancer care. ECPC engages in policy development, collaborates with European institutions, and runs various campaigns to improve cancer outcomes. The organization also provides resources and support to patients and caregivers, and actively participates in European health initiatives and research projects. ECPC aims to empower patients, influence health policy, and ensure that patient perspectives are integrated into cancer care and research.
Annabelle's Challenge
Annabelle's Challenge is a charity focused on supporting individuals affected by vascular Ehlers-Danlos syndrome (vEDS). The organization provides support programs, awareness campaigns, research funding, and professional guidance. It aims to improve quality of life for patients and families, promote research and medical understanding, and advocate for better healthcare and support services. The charity also hosts conferences, supports patient stories, and collaborates with NHS services and other professional organizations to advance knowledge and care for vEDS. Annabelle's Challenge is a patient advocacy organization dedicated to supporting individuals with vascular Ehlers-Danlos syndrome (vEDS). It provides resources, support groups, educational materials, and advocacy for patients and families affected by vEDS. The organization aims to improve awareness, facilitate research, and enhance patient care through collaboration with healthcare professionals and the community. It offers a helpline, educational resources, emergency preparedness tools, and opportunities for involvement in research and outreach activities. Annabelle's Challenge also promotes self-advocacy, mental health support, and access to medical information to empower patients in managing their condition.
Skin Cancer Foundation
The Skin Cancer Foundation is dedicated to education, prevention, early detection, and prompt, effective treatment of skin cancer. It is a nonprofit organization that relies on donor funds. The Foundation promotes sun safety and skin cancer awareness through public education campaigns, professional training, and research support. It also provides resources for skin cancer detection and prevention, including educational materials, screening programs, and advocacy for sun protection policies. The Skin Cancer Foundation is a nonprofit organization dedicated to education, prevention, early detection, treatment, and research of skin cancer. It provides resources for patients, medical professionals, and the public, including treatment information, prevention tips, and support services. The Foundation also advocates for policies to reduce skin cancer risk and promotes sun safety awareness. It collaborates with healthcare providers, researchers, and community organizations to advance skin cancer awareness and care.
Huntington's Disease Youth Organization
HDYO is the only organization who focus solely on supporting young people impacted by HD around the world. Will you help us? HDYO offers resources, peer support, and connects young people impacted by Huntington's Disease globally. They provide educational materials, support groups, and advocacy initiatives to improve the lives of affected individuals and their families. The organization also engages in research support and collaborates with various partners to enhance awareness and support services.
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
Take the first step toward connection and support. Search for patient groups that match your needs today.
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