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.
Pitt Hopkins UK
In September 2013 the members of the Pitt Hopkins UK fundraising group knew of 33 cases of PTHS in the UK. In September 2014 we were in contact with at least 40. At our PTHS UK Day in July ’14, we heard that there were about 200 diagnosed people in the UK. This meant we had contact with about 1 in 5 of all cases already diagnosed in the UK. In June 2015 we had contact with over 60 families. Some of these new families came from the DDD study. In 2020 we have contact with about 100 families in the UK and Ireland and it is estimated there are 300 families diagnosed in the UK. We know there are many more families out there both diagnosed and undiagnosed. We hope to find them. If you are one of them please contact us.
TEB Selbsthilfe Tumore und Erkrankungen der Bauchspeicheldrüse
The TEB Selbsthilfe is a non-profit organization founded in Baden-Württemberg, Germany, dedicated to supporting patients with tumors and diseases of the pancreas. It provides informational materials, brochures, patient support programs, advocacy activities, and educational resources. The organization collaborates with medical professionals, offers a helpline, regional groups, and participates in policy and research initiatives. It is supported by the Krebsverband Baden-Württemberg and is a founding member of the World Pancreatic Cancer Coalition. The organization aims to improve awareness, support, and research for pancreatic conditions.
MedicAlert
MedicAlert Foundation is a registered charity: 233705. It provides medical identification services, including emergency help lines, ID bracelets, and related support for individuals with medical conditions. The organization offers membership services, educational resources, and support for patients and their families. It collaborates with healthcare providers and emergency services to ensure rapid response in medical emergencies. The foundation also engages in advocacy for patient safety and awareness, and maintains a website with comprehensive information and resources. MedicAlert Foundation is a registered charity: 233705. It provides medical ID jewelry and services to help ensure vital health information is instantly available in emergencies. The organization offers membership services, protection programmes, and support for individuals with medical conditions or allergies. It collaborates with emergency services, healthcare professionals, and partners such as NHS, Lions, and Fundraising Regulator. The charity aims to improve safety and confidence for vulnerable populations, including those with dementia, autoimmune diseases, allergies, and other medical conditions. It maintains a website with educational resources, membership options, and donation opportunities. The organization is involved in public awareness campaigns, member stories, and community engagement. It also offers the Herbert Protocol scheme for at-risk individuals, with data retention policies and privacy safeguards in place.
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.
Cure For Claire West Midlands C.I.C.
We are a Community Interest Company that does exactly as it states, We benefit the community. Everything you see on this site has had hard work put into every part, we pay for the site and the upkeep ourselves, we produce all the information ourselves, we create all multimedia ourselves, we pay for continuous training ourselves.
MDS UK Patient Support Group
MDS UK Patient Support Group provides support, information, and advocacy for individuals in the UK diagnosed with Myelodysplastic Syndromes (MDS) or Chronic Myelomonocytic Leukaemia (CMML), and their caregivers. They offer online support meetings, educational resources, real patient stories, and facilitate access to specialist centers. The organization also engages in fundraising activities to raise awareness, advocate for improved treatments, and drive research into MDS and CMML. MDS UK Patient Support Group provides comprehensive information, support, and resources for patients, families, and caregivers affected by Myelodysplastic Syndromes (MDS). They offer educational materials, patient booklets, factsheets, support meetings, and guidance on living with MDS. The organization also engages in advocacy, supports clinical trials, and provides resources for traveling and managing the disease. Their activities include raising awareness, patient education, and supporting research collaborations. They are a registered charity in the UK, with contact details including a phone number and email, and maintain a website with extensive patient resources.
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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