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.
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.
MPS Society
The MPS Society is a UK-based charity dedicated to transforming lives through support, research, and awareness for individuals affected by MPS, Fabry, and related lysosomal diseases. It provides professional support, patient resources, advocacy, and funding for research into treatments and cures. The organization offers a range of support services including mental health, bereavement, and community support, and actively engages in research, clinical trials, and policy advocacy. It maintains a website with extensive resources, publishes reports and educational materials, and collaborates with healthcare professionals and research institutions. The Society aims to improve diagnosis, treatment, and quality of life for patients and families affected by these rare conditions.
Association for Glycogen Storage Disease (UK) Limited
We help individuals and families affected by Glycogen Storage Disease (GSD) by putting people in contact, providing information and support, publishing a magazine and holding conferences, workshops, courses and family events.
Rarebeacon
Beacon for rare diseases is a UK-based charity that hosts events and community activities for the rare disease community. The organization offers events such as patient group trainings, masterclasses, and conferences, and maintains an events calendar featuring both online and in-person formats. They emphasize accessibility of events and state that events are designed for all stakeholders in the rare disease community, with at least one target audience being rare disease patient groups. The site footer provides the organization’s address in Cambridge, charity and company registration details, and a contact email for the projects team (projects@rarebeacon.org). Rarebeacon, now known as Beacon for Rare Diseases, is a UK-based organization dedicated to supporting and advocating for individuals with rare diseases. Founded in 2012, it provides resources, research, and community support to improve the lives of patients and their families. The organization engages in public education, policy advocacy, and collaborates with research institutions. It offers patient support programs, educational resources, and hosts events and campaigns to raise awareness about rare diseases. Its activities include publishing impact reports, facilitating patient and caregiver networks, and promoting research and drug development in the rare disease field. The organization operates primarily in the UK but has a global outreach through its online platforms and partnerships.
Action Bladder Cancer UK
Action Bladder Cancer UK (ABC UK) is a charity organization dedicated to raising awareness of bladder cancer, improving early diagnosis, and supporting research and patient support activities. They provide patient stories, educational resources, and support groups. The organization is involved in advocacy, research funding, and clinical trials. They operate primarily in the UK, with a physical address at 6 Trull Farm Buildings, Tetbury, Gloucestershire, GL8 8SQ. The charity was established to address the late detection of bladder cancer and aims to improve survival rates. They have a registered charity number 1164374. The organization engages in policy advocacy, supports patient education, and collaborates with healthcare professionals and researchers. Action Bladder Cancer UK (ABC UK) is a charity organization dedicated to supporting patients with bladder cancer, raising awareness, funding research, and providing educational resources. They operate primarily within the UK, with activities including patient support groups, research grants, educational programs, and advocacy campaigns. The organization is involved in clinical trial support, research collaborations, and policy engagement. They maintain a website with resources for patients and professionals, and have active social media presence on Twitter and Facebook. The charity was established in 2015 and is registered under charity number 1164374. They offer various support services, educational materials, and participate in policy discussions related to bladder cancer.
Action Kidney Cancer
<p>The United Kingdom’s only patient-led kidney cancer charity</p> Action Kidney Cancer is the UK’s largest and most active patient-led kidney cancer charity. It provides support, information, and a caring, knowledgeable community for patients, survivors, and those affected by kidney cancer. The organization offers a helpline, patient support forum, community map, patient groups, and patient information days; hosts educational resources such as essential guides to kidney cancer, information on treatments, help sheets, and materials to support shared decision-making; and facilitates campaigns, fundraising, and involvement in advocacy. It is a registered charity in England, Wales, and Scotland, with headquarters in Manchester, United Kingdom, and maintains partnerships and resources to assist kidney cancer patients and families, including online and in-person programs.
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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