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.
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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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Finding the right support group is simple. We've made it easy for you.
Search Your Condition
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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.
Rare Disease UK
We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
Chromosome 18 Europe
Chromosome 18 Registry and Research Society (Europe) is a charitable organization (Charity Number SC040399) associated with the Chromosome 18 Registry and Research Society. It facilitates a European community for families, friends, and members affected by Chromosome 18-related conditions, coordinating governance through a Management Committee and communicating developments ahead of its Annual General Meeting. The event described on this page is an informal, family-friendly gathering at the Glasgow Science Centre intended to connect attendees, share experiences, and discuss the organisation’s future direction, with feedback invited ahead of the next AGM. The site notes an international component, including a visit by several families from the US Chromosome 18 Registry and Research Society to Scotland.
CLL Support
Welcome to CLL Support, a patient – led UK charity. Our mission is to support and empower Chronic Lymphocytic Leukaemia (CLL) patients, and Small Lymphocytic Leukaemia (SLL) patients, their families and supporters through education and access to reliable, relevant and current information. We also represent CLL patients in discussions with government, pharmaceutical companies, other leukaemia charities and the National Institute for Care and Health Excellence (NICE). Our charity was founded in 2004 by patients with Chronic Lymphocytic Leukaemia (CLL) and their partners. It continues to be run by volunteers, all of whom have been personally affected by CLL or Small Lymphocytic Lymphoma (SLL). CLL and SLL are slightly different forms of the same disease and are managed in the same way. Currently, we have more than 3,000 members.
Myotubular Trust
The Myotubular Trust is a UK-based charity dedicated to supporting research, raising awareness, and providing support for individuals affected by myotubular and centronuclear myopathies. It aims to accelerate treatments and improve quality of life through funding research projects, fostering collaborations, and engaging with the community. The organization also offers educational resources, patient registries, and advocacy campaigns to promote understanding and drive progress in the field.
Children & Young People's Cancer Association (CCLG)
CCLG - The Children & Young People's Cancer Association is a charity dedicated to supporting children, young people, and their families affected by cancer. They focus on research, early diagnosis, advocacy, education, and support services. They operate a wide range of programs including public awareness campaigns like Child Cancer Smart, fundraising initiatives, and professional guidance to improve cancer diagnosis and treatment in children and young people. They also lead research projects, collaborate with healthcare professionals, and influence policy to improve outcomes for young cancer patients. CCLG - The Children & Young People's Cancer Association is a registered charity in England, Wales, and Scotland dedicated to supporting children, young people, and their families affected by cancer. The organization provides information resources, advocacy, research, and support services. It operates from Leicester, UK, and has a focus on childhood and young people's cancers, including types such as leukemia, brain tumors, and other pediatric cancers. CCLG collaborates with medical research charities, offers educational materials, and engages in policy and advocacy activities to improve cancer care and outcomes for young patients.
Parkinson's Europe
Parkinson's Europe is the only European Parkinson's umbrella organisation. We have been championing and working with the global Parkinson’s community for nearly 30 years. As the leading voice for Parkinson’s in Europe, we provide trusted information; advance and share good practices; raise awareness and improve understanding of the condition; and facilitate research collaboration. Our vision is that people with Parkinson's and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life.
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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