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.
Rare Disease UK
We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
Usher Syndrome Ireland
Usher Syndrome Ireland is a charity founded by people with Usher syndrome, for people with Usher syndrome. It aims to support, inform, empower, and build a community for those affected by Usher syndrome. The organization raises awareness, funds research, advocates for affected individuals, and creates a supportive community. It provides information, support, and advocacy for people with Usher syndrome and their families. Usher Syndrome Ireland is a patient organization dedicated to providing information, support, and resources for individuals and families affected by Usher syndrome. They offer educational materials, support services, and advocacy to improve quality of life and access to care. The organization collaborates with various health and social services to promote awareness and research. They maintain a website with extensive resources, including research news, patient registries, and community support programs. Their mission is to empower those affected by Usher syndrome through education, support, and advocacy, fostering a strong community and advancing research efforts.
Sturge Weber UK
Sturge Weber UK is dedicated to improving the lives of those affected by Sturge Weber Syndrome through providing strength and support, promoting awareness both publicly and professionally, promoting medical research, creating a supportive community, and creating a collaborative approach in the level of care individuals receive throughout their life.
British Lymphology Society
The British Lymphology Society is a dynamic and innovative body providing a strong professional voice and support for those involved in the care and treatment of people with lymphoedema and related lymphatic disorders, including lipoedema. The Society seeks to achieve high standards of care and equitable access to treatment across the UK and promotes early detection and intervention and, where appropriate, screening and prevention.
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.
Cavernoma Alliance UK
Cavernoma Alliance UK (CAUK) is a charity organization dedicated to supporting individuals affected by cavernoma. It provides patient support services, educational resources, advocacy campaigns, and conducts research. The organization engages in policy advocacy, offers a helpline, support groups, and runs awareness and fundraising activities. It maintains a website with extensive information on cavernoma, including facts, leaflets, and research updates. CAUK collaborates with medical professionals and has an active social media presence. It is a registered charity with the number 1197257, based in Oxfordshire, UK, and operates in multiple countries through its online presence.
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.
Start Your Search