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.
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.
Pembe Hanım
LL HakkımızdaKanser Toplumsal Bir SorundurPembe Hanım Kanserli hasta ve hasta yakınları tarafından kurulmuş, ticari amaç gütmeyen tam bağımsız bir sivil toplum kuruluşudur. Bir hasta derneği olan PH sağlık politikalarında hastaların sesini olmakta, kanser politikalarının oluşturulmasına katkıda bulunmaktadır. Bir Ulusal Kanser Enstitüsü kurulmasını hedefleyen, bilgiye erişimi önemseyen PH kanser hasta ve yakınlarına moral destek vermektedir.MisyonKanser hastası ve yakınlarının bilgiye erişimini sağlamak,moral destek vermek, yaşam kalitesini yükseltmek ve kanserin iyileşebilir bir hastalık olduğunu anlatmak.VizyonKanser hasta hakları savunuculuğu yapmak, sağlık politikalarında etkili olmak, kanser hastasını sorunların çözümünde ve sağlık politikalarında çözüm ortağı yapmak
Lymphoma Action
Lymphoma Action is a registered charity in England and Wales (1068395) and in Scotland (SC045850). It provides information, support, and advocacy for people affected by lymphoma. The organization offers a range of patient support services, educational resources, and campaigns to raise awareness and improve patient outcomes. It collaborates with healthcare professionals and policymakers to influence policy and advance research in lymphoma. The organization maintains a website with extensive resources, including self-management tools, wellbeing videos, and clinical trial information. It operates in the UK and has a global reach through online resources and social media platforms.
Fabry International Network
Since Fabry disease is a rare genetic disorder, and since there are thousands of rare diseases, it’s hard for individual patients and caregivers to be heard. Therefore, when striving for better care and cure for Fabry patients, we need them to join forces and speak out. That’s where FIN comes in: an independent and vibrant network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease. We back 60 patient organizations in 57 countries. We connect health professionals and we ally with industry partners. We envision a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure. Our mission, therefore, is to empower Fabry patients all over the world. FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.
Australian Pancreatic Cancer Genome
The Australian Pancreatic Cancer Genome Initiative (APGI) is a global research enterprise of over 100 scientists, clinicians and allied health professionals involved in pancreatic cancer research and care. The APGI has mapped the genome of pancreatic cancer in a landmark effort as part of Australia’s contribution to the International Cancer Genome Consortium (ICGC). This fundamental understanding of the genetic underpinnings of Pancreatic Cancer will accelerate the evolution of pancreatic cancer care into the molecular age of oncology. The APGI’s world-class BioResource – biological samples coupled with comprehensive clinical and genomic data – is aiding research worldwide in ongoing discovery and development through quality research and strategic collaborations.
Digestive Cancers Europe
Digestive Cancers Europe is a patient advocacy organization dedicated to improving the lives of individuals affected by digestive cancers through advocacy, education, research, and support initiatives. They work to raise awareness, influence policy, and provide resources and support to patients and caregivers across Europe. The organization collaborates with healthcare professionals, researchers, and policymakers to advance understanding and treatment of digestive cancers, including colorectal, gastric, liver, pancreatic, and other rare cancers. They also focus on promoting early detection, personalized medicine, and access to innovative therapies. Their activities include publishing educational materials, organizing awareness campaigns, supporting research projects, and engaging in policy advocacy to improve patient outcomes and healthcare systems.
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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