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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Finding the right support group is simple. We've made it easy for you.
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Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
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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.
Stiff Person Syndrome Support and Charity
<p>This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may also be of interest to caregivers, care professionals, researchers (together with advocates for the condition) and the general public.</p><p>------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------</p> Stiff Person Syndrome Support Group and Charity, founded in 1998 by Liz Blows, is a UK-based not-for-profit organization dedicated to supporting individuals with Stiff Person Syndrome (SPS). The organization provides information, advocacy, support services, and promotes research into SPS. It aims to raise awareness of SPS, offer patient support, and facilitate research collaborations. The charity operates in the UK and Ireland, with a physical address at 75 Normandy Avenue, Beverley, East Yorkshire, HU17 8PF. It has a charity registration number 1099206. The organization engages in various activities including hosting conferences, supporting patient stories, and maintaining an online presence through social media platforms such as Facebook, Twitter, Instagram, and LinkedIn. The organization also provides educational resources, supports research publications, and collaborates with medical and research institutions. Key personnel include Liz Blows (Chair). The charity is actively involved in policy advocacy, research funding, and community engagement to improve the lives of SPS patients.
Angelman UK
AngelmanUK is a United Kingdom-based support group. The trustees are all volunteers with direct experience of Angelman Syndrome either as parents or relatives of children or adults with AS. We also have a panel of experts who are able to answer and advise on more complex questions. Many of these experts are recognised worldwide in their fields of expertise relating to Angelman Syndrome.
MDS UK Patient Support Group
MDS UK Patient Support Group provides support, information, and advocacy for individuals in the UK diagnosed with Myelodysplastic Syndromes (MDS) or Chronic Myelomonocytic Leukaemia (CMML), and their caregivers. They offer online support meetings, educational resources, real patient stories, and facilitate access to specialist centers. The organization also engages in fundraising activities to raise awareness, advocate for improved treatments, and drive research into MDS and CMML. MDS UK Patient Support Group provides comprehensive information, support, and resources for patients, families, and caregivers affected by Myelodysplastic Syndromes (MDS). They offer educational materials, patient booklets, factsheets, support meetings, and guidance on living with MDS. The organization also engages in advocacy, supports clinical trials, and provides resources for traveling and managing the disease. Their activities include raising awareness, patient education, and supporting research collaborations. They are a registered charity in the UK, with contact details including a phone number and email, and maintain a website with extensive patient resources.
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.
Brain Tumour Research
We are the only national charity in the UK focused on finding a cure for all types of brain tumours through campaigning to increase the national investment in brain tumour research to £35 million per year, while fundraising to create a network of seven sustainable Brain Tumour Research Centres of Excellence across the UK.
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.
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