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.
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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.
Gene People
Gene People, previously known as Genetic Disorders UK, is a registered charity with a vision to improve the lives of individuals and families affected by genetic conditions. While individual genetic conditions are rare, it is thought that there are currently more than 6,000 diagnosed conditions and new conditions are being identified every day. It is estimated that 1 in 25 children is affected by a genetic condition. This means that in the UK, 30,000 babies and children are newly diagnosed each year and more than 2.4 million children and adults are living with a genetic condition. Our mission is to be the leading source of information and support for both those affected by a genetic condition, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.
Childhood Interstitial Lung Disease Foundation
The Child Lung Foundation is a charity supporting children affected by childhood Interstitial Lung Disease (chILD). Established in 2010, it provides resources, support groups, and promotes research development. The organization aims to improve diagnosis, treatment, and quality of life for children with chILD, and offers educational resources, patient support services, and advocacy activities. It collaborates with medical professionals, researchers, and patient families to advance understanding and care of rare pediatric lung diseases.
Pancreatic Cancer Action
What we do: Early diagnosis Subscribe Taking Action in Scotland The team at Pancreatic Cancer Action Current vacancies Contact Us Support from Trusts and Foundations Financial information Your privacy About Pancreatic Cancer Action We are the only UK charity that specifically focuses on improving pancreatic cancer survival rates through early diagnosis in everything we do. We raise awareness of the symptoms and risk factors of pancreatic cancer across the year. Join us by raising awareness of pancreatic cancer and by sharing your story! Founded by a pancreatic cancer survivor, Ali Stunt, who proves that survival is possible, Pancreatic Cancer Action’s vision is a day when everyone is diagnosed early and survives pancreatic cancer. Quite simply, we know that pancreatic cancer can be detected early, and as long as we are here and continue to be supported, we will do all we can do to make sure this happens more and more.
Dancing Eye Syndrome Support Trust
The Dancing Eye Syndrome Support Trust, established in 1997, provides mutual support and encouragement to parents of children diagnosed with Dancing Eye Syndrome (Opsoclonus-Myoclonus Syndrome). It offers a platform for parents to connect, share experiences, and access information through meetings and newsletters. The trust also produces educational resources for families and supports research and awareness efforts related to the condition. It arranges meetings for members, produces informational materials, and provides contact details for neurology specialists for adults with childhood-onset OMS. Providing support and information to families of children with Dancing Eye Syndrome. OMAS or Dancing Eye Syndrome is a rare autoimmune condition affecting young children, characterized by rapid eye movements, jerking movements, and loss of balance. Most children are diagnosed around 18 months, with a prevalence of 1 in 5 million children worldwide. The syndrome is often triggered by a neuroblastoma tumor or viral infection. Symptoms include opsoclonus, myoclonus, ataxia, speech difficulties, sleep problems, behavioral issues, hypotonia, and vomiting. Treatment involves immunotherapy, corticosteroids, IVIg, rituximab, and possibly surgery for tumors. The cause varies by age, with neuroblastoma in young children and idiopathic or viral causes in older children. The organization was established in 1997, providing support, raising awareness, and hosting conferences. Contact: support@dancingeyes.org.uk, Tel: 07746 129950. The trust is involved in fundraising, awareness campaigns, and community support.
MEBO Research
MEBO’s Mission is to initiate research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis, including, but not limited to, Trimethylaminuria. Studies such as the "Dynamics of the Gut Microbiota in Idiopathic Malodor Production" and "MEBO Metabolic Profiling" are ground-breaking studies which explore innovative insight into conditions of malodor and/or PATM.
Batten Disease Family Association
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure. The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
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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