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.
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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.
PKD Charity
Founded in 2000, we’re the first and only UK charity solely dedicated to improving the lives of an estimated 70,000 individuals and their families affected by polycystic kidney disease (PKD) in the UK. PKD is a range of life-threatening inherited conditions that can cause kidney failure and affect other organs in the body such as the liver, brain, heart and bowels. Most people with PKD live with an uncertain prognosis, intermittent pain and infections, and then have to undergo life-saving dialysis or transplant in their 50s. A few babies have a rare form of PKD which results in death during pregnancy or shortly after birth; the surviving children often have to have either a kidney or liver transplant before the age of 10. We provide reliable, accredited information, advice and personalised support. We raise awareness of the burden of PKD, both clinical and psychosocial. We fund research aimed at understanding more about PKD and the discovery of therapies that will improve quality and longevity of life.
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.
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.
Selbsthilfe Pankreaskarzinom
Selbsthilfe Pankreaskarzinom is an organization providing resources, information, and support for individuals affected by pancreatic cancer. They offer downloadable brochures on various topics related to pancreatic cancer, including disease information, treatment options, patient rights, and complementary medicine. The organization aims to educate, support, and advocate for patients and their families, promoting awareness and understanding of pancreatic cancer. They also facilitate community engagement through events like World Pancreatic Cancer Day and provide contact information for assistance and inquiries.
Annabelle's Challenge
Annabelle's Challenge is a charity focused on supporting individuals affected by vascular Ehlers-Danlos syndrome (vEDS). The organization provides support programs, awareness campaigns, research funding, and professional guidance. It aims to improve quality of life for patients and families, promote research and medical understanding, and advocate for better healthcare and support services. The charity also hosts conferences, supports patient stories, and collaborates with NHS services and other professional organizations to advance knowledge and care for vEDS. Annabelle's Challenge is a patient advocacy organization dedicated to supporting individuals with vascular Ehlers-Danlos syndrome (vEDS). It provides resources, support groups, educational materials, and advocacy for patients and families affected by vEDS. The organization aims to improve awareness, facilitate research, and enhance patient care through collaboration with healthcare professionals and the community. It offers a helpline, educational resources, emergency preparedness tools, and opportunities for involvement in research and outreach activities. Annabelle's Challenge also promotes self-advocacy, mental health support, and access to medical information to empower patients in managing their condition.
Smile with Shiv
Smile with Shiv is a patient advocacy organization focused on Duchenne muscular dystrophy (DMD).
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.
Start Your Journey
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