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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Access support groups from around the world, or find local communities near you that speak your language.
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Search Your Condition
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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.
Behçet's UK
Behçet's UK is a patient advocacy organization dedicated to supporting individuals affected by Behçet’s disease. They provide information, support services, and promote research to improve diagnosis and treatment. The organization operates a helpline, offers patient education resources, and runs support groups and events across the UK. They are involved in advocacy activities to raise awareness and influence policy related to Behçet’s disease. The organization maintains a website with comprehensive information and links to social media platforms. They also coordinate with national centers of excellence for specialized care. Behçet's UK is a charity dedicated to supporting individuals affected by Behçet's disease, a rare and complex autoimmune condition. The organization provides patient support, promotes research, and raises awareness about Behçet's disease. It offers various programs including support groups, educational resources, and advocacy activities. Behçet's UK collaborates with medical professionals and research institutions to improve patient care and outcomes. The organization also hosts conferences, surveys, and community events to engage with patients and healthcare providers. It maintains a helpline, social media presence, and partnerships with other health and advocacy groups. The charity is committed to advancing understanding and treatment of Behçet's disease through research and policy influence.
Melanoma UK
At Melanoma UK, we believe it is vital to proactively use evidence in our advocacy work. An increasing proportion of patients are highly sophisticated in their research and understanding of evidence, and we are matching this movement. Examples include participation in health technology appraisal meetings (NICE and SMC), presenting clinically validated information on our website, authoring publications, engaging with our own panel of medical experts, and supporting patient-centric initiatives. Ultimately, all these initiatives are designed to benefit and support patients, which has been Melanoma UK's mission since its foundation.
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.
Lung Cancer Research Foundation
The mission of the Lung Cancer Research Foundation (LCRF) is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment and cure of lung cancer.
Cure Mito Foundation
The Cure SURF1 Foundation was founded in 2018 by a group of families determined to fight for our children’s lives. Each of us has a young child diagnosed with SURF1 Leigh syndrome. Each of us has been told by doctors that there is no treatment, no cure, and no hope. And each of us has refused to accept this as a final answer. In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to expand our efforts and changed the name of our foundation from the Cure SURF1 Foundation to the Cure MITO Foundation. Our primary focus is advancing research towards a cure for Leigh syndrome and eventually for mitochondrial disease as a whole. A successful outcome will mean not only hope for our own children, but also life-saving treatments for future generations impacted by this disease.
European Tuberous Sclerosis Complex Association
Established in 2012, ETSC is a federation of Tuberous Sclerosis Associations. ETSC believes in total “patient experience” and that interaction with all healthcare providers and relative agencies is paramount. Objectives • Increase knowledge and awareness on TSC • Promote implementation of European and International diagnostic criteria, surveillance and treatment guidelines • Stimulate research on TSC • Interest European and International organisations in the welfare of those with TSC and their families • Exchange information of mutual interest between associations. Aims • Total patient experience and interaction in each individual country with all healthcare providers and agencies • Uniting TSC Associations to ensure knowledge and surveillance on our rare disorder and orphan drugs are increased • Good working relationships with Pharma and the inclusion of representatives from National Organisations in information and education on Clinical trials and any new drugs being developed for use with our rare disease • Vigilance on protocols and new drugs
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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