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.
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a non-profit alliance of patient organizations in Europe dedicated to empowering, supporting, and advocating for people living with rare diseases. It coordinates network activities, policy initiatives, information and support for patients and families, and collaborates with partners to advance rare disease research and policy.
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).
Metabolic Support UK
Metabolic Support UK are the leading organisation for Inherited Metabolic Disorders (IMDs), supporting thousands of people worldwide through providing individual support, building communities, and continually advocating for and empowering those living with IMDs. Since its inception in 1981, our organisation has strived to support those in the rare community, expanding new-born screening, accelerating the development of orphan drugs, and acting instrumentally in establishing EURORDIS, ensuring people living with IMDs have the best quality of life possible. Moving forward, utilising our 10 year strategy we will continue to improve the lives of people living with Inherited Metabolic Disorders, and to work collaboratively with our key partners and supporters to ensure that we achieve this. Our strategy focuses on four main pillars: Indvidual Support Building Communities Empowerment Advocacy
HBA Support
We are a new and growing, patient-focused organisation. Hereditary Brain Aneurysm Support (HBA Support) aims to support and inform people and families living with familial brain aneurysms or those who may be at risk. We will also raise awareness of the condition as a rare condition to improve and save lives. Working with families and clinicians alike, we will help advocate for improved support, better care and more research into this hereditary condition. HBA Support was set up in 2020 by Rebecca and Emma Middleton. After losing their mum and grandmother to brain aneurysms, Rebecca went through her own battle for diagnosis and subsequent treatment for a right MCA brain aneurysm.
Help 4 HD International
Help 4 HD International is an international patient advocacy organization focused on Huntington's disease. The website presents a mission, resources, and programs to support HD patients and families. It hosts a diverse range of events each year, including Awareness Days, symposia, walks, Casino Night Out, and Cocktails for a Cure, and provides access to resources via a Resource Database. The site also features The Huntington's Post and Help 4 HD Live, indicating educational and community-facing content and events to inform and engage patients, caregivers, and professionals. Help 4 HD International is a nonprofit organization dedicated to educating the world about Huntington’s disease. It provides resources, support, and advocacy for patients, caregivers, and families affected by HD. The organization offers various programs including resource databases, educational materials, support groups, and advocacy campaigns. It engages in policy work, clinical trial support, and research collaborations. Help 4 HD also produces publications, reports, and educational brochures to raise awareness and provide information about Huntington’s disease. The organization is involved in community outreach, law enforcement awareness, and caregiver support initiatives. It maintains a website with social media presence on YouTube, Facebook, Instagram, and Twitter. It was founded in 2010 and operates internationally, with a focus on education, support, and advocacy.
Pancare Foundation
Pancare Foundation supports Australians facing upper gastrointestinal (GI) cancers—including stomach, liver, pancreatic, oesophageal, and biliary cancers—providing support, information and resources to patients, carers and healthcare professionals.
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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