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.
Timothy Syndrome Alliance
Our mission is to improve the diagnosis, treatment and care of children with Timothy Syndrome, and to support the families of those diagnosed. Timothy Syndrome Alliance (TSA) is a charity dedicated to improving the diagnosis, treatment, and care of children with Timothy Syndrome and supporting their families. It aims to raise awareness, enhance scientific understanding, and reduce family isolation through community support, advocacy, and research initiatives. TSA is run entirely by parents and volunteers, and is NGO Source certified as a 501(c)(3) organization. It operates globally with members across many countries, including the US, UK, and others. The organization offers programs such as family events, support groups, and educational resources, and engages in research and policy advocacy related to CACNA1C-related disorders.
TAPS Support Foundation
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin pregnancies are diagnosed, handled, and treated, as well as raising the profile of Twin Anemia Polycythemia Sequence (TAPS).
Maggie's
Maggie's provides free cancer support and information in centres across the UK and online. They offer professional staff, help with money worries, support for friends and family, support groups, courses and workshops, and resources for managing emotions, practical challenges, symptoms and side effects, and social aspects of living with cancer. They also provide specific support for carers and those dealing with bereavement. Their services aim to help people live well with cancer. Maggie's is a cancer support organization providing free support services to individuals affected by cancer, including children, young people, and their families. They offer individual support, family support, support groups, psychology sessions, and signposting to other organizations. Their services are available at Maggie's centres across the UK and internationally. They also provide educational resources, advocacy activities, and community engagement. Maggie's is committed to supporting children and young people affected by cancer, offering tailored support and resources for teachers and group leaders. The organization is based in Glasgow, Scotland, and operates in multiple countries. It was established in 1995. Maggie's is a registered charity in Scotland with charity number SC024414.
IPOPI
IPOPI is an international non-profit association registered in Belgium; it aims to improve the lives of people with primary immunodeficiencies (PIDs) worldwide. The organization operates through a strategic plan and network of member organizations to advocate for early diagnosis and optimal care, PID awareness, and stakeholder collaboration. IPOPI conducts work on PID-related awareness, early diagnosis and care, NMO support within NMOs, and provides patient-focused resources and tools (Leaflets, publications, and the PID Life Index). It maintains corporate sponsor relationships and programmatic initiatives such as early diagnosis and care, PID awareness, and NMO-related support. IPOPI (International Patient Organisation for Primary Immunodeficiency) is an organization dedicated to improving the lives of patients with primary immunodeficiencies worldwide. It engages in advocacy, education, and support activities, collaborates with stakeholders, and promotes awareness and early diagnosis of PIDs. IPOPI maintains a network of experts, produces educational materials such as leaflets, and is involved in policy and research initiatives. The organization is based in Belgium, with a focus on global impact, and has partnerships with corporate sponsors. It provides resources for patients and healthcare professionals, and actively participates in policy and clinical development activities.
LHON Society
The LHON Society is a patient-led support group for LHON, a mitochondrial disease affecting the retina and optic nerve, causing loss of vision. It provides emotional support, educational resources, support groups, community activities, and research updates. The organization offers counselling services through RNIB and Macular Society, and maintains a network of support groups and community programs. It is registered with the Charity Commission for England & Wales (number 1157206). The society also engages in research activities, clinical trials, and partnerships with biotech and pharmaceutical companies. It has a presence on social media platforms including Facebook, Twitter, and LinkedIn.
Cystinosis Foundation UK
The Cystinosis Foundation UK aims to: Provide support. We aim to provide support to all diagnosed with cystinosis, their families and relatives. Provide information. We shall provide relevant, accessable and up to date information about the disorder, as well as advice on specialist sources of help for new symptoms developing in patients. Publish newsletters. Up to date newsletters containing relevant information for patients and supporters will be produced regularly. Organise or participate in conferences relevant to cystinosis. We aim to publicise cystinosis to the medical profession (particularly paediatric consultants) so that those born with cystinosis are identified as soon as possible. Support research into the treatment of cystinosis. Work with cystinosis related charities worldwide to help co-ordinate research support, maintain awareness of new treatments and seek to understand more about metabolic disorders in general.
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: 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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