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.
Avery's Hope
Avery's Hope is a nonprofit organization dedicated to supporting children and families affected by pediatric gastrointestinal (GI) disorders. They provide patient assistance programs, educational resources, support services, and organize community events to raise awareness and foster a supportive community for those impacted by rare pediatric GI conditions. The organization collaborates with medical professionals, researchers, and other advocacy groups to improve the quality of life for affected children and their families. Their initiatives include summer camps, art and yoga therapy programs, and fundraising events such as cycling and music festivals. Avery's Hope also advocates for policy changes and increased research funding to address unmet medical needs in pediatric GI health. Avery's Hope is a nonprofit organization dedicated to supporting individuals and families affected by rare diseases. They provide resources, advocacy, and support services to improve quality of life and access to care. The organization is based in New Hope, PA, and is a registered 501(c)(3). Their initiatives include patient support programs, educational resources, and community engagement. They collaborate with various partners and participate in advocacy activities to influence healthcare policies. Avery's Hope also offers programs such as the BrAvery Awards, BasiCare Plus, Healing Arts Program, and Summer in HOPE Day Camp. They maintain a presence on social media platforms and have a network of affiliated organizations. The organization is committed to transparency and community support.
The Aarskog Foundation
The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited. The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this RARE Genetic condition. Addressing Aarskog Syndrome is vital in order for it to be recognised as a disability across all governing bodies to ensure all Aarskog patients have access to the same resources as any other person. Patients living with Aarskog Syndrome come together through The Aarskog Foundation in a structured environment to create an Aarskog community and a voice through advocacy and exchange experiences. To this end we aim to unite, expand and put Aarskog Syndrome on the agenda of organisations and institutions both in the UK and across the world.
Cancer Support UK
<p>We provide practical and emotional support to people with cancer, during and after the treatment period.</p><p>We support people with all kinds of cancer across the UK. Our services are designed and delivered by people who have experienced cancer themselves – to improve the experience of others.</p> Cancer Support UK is a UK-based charity dedicated to supporting cancer patients and their families throughout the cancer journey. It emphasizes emotional and practical support, including free Cancer Coach programs (peer group support, digital learning, and Focus Forwards workshops) for adults who have completed cancer treatment. The organization offers Cancer Kits and workplace training, signposting, and educational resources, and invites donations and involvement through volunteering and referrals. The site notes impact such as helping 4,952 people in 2020 and highlights storytelling and shared experiences to raise awareness of its services. Core activities include running Cancer Coach programs (peer groups online or by phone, digital learning, and focused workshops), providing educational resources and materials (Cancer Types, Signposting, Resources), offering cancer-related patient support services, and broader fundraising and outreach efforts.
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.
Live Through This
The website indicates that the organisation 'Live Through This' has rebranded and become OUTpatients. Visitors to livethroughthis.co.uk are being redirected to the new OUTpatients site.
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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