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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How It Works
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.
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas is dedicated to supporting research into hypothalamic hamartomas (HH), a rare brain disorder characterized by lesions in the ventral hypothalamic region. The organization funds and awards research grants, facilitates international symposia, and collaborates with leading medical and research institutions worldwide. Their research initiatives include genomic profiling, functional MRI studies, animal model development, and genetic research to better understand HH etiology, diagnosis, and treatment options. They actively support scientific exchange through conferences and publish research articles. The organization also engages in advocacy, provides educational resources, and partners with medical professionals and institutions to advance HH research and treatment.
Pancreatic Cancer UK
Pancreatic Cancer UK is a charity dedicated to providing information, support, and advocacy for individuals affected by pancreatic cancer. They offer a range of publications, educational resources, and support services to help patients, families, and healthcare professionals. The organization actively engages in advocacy activities to influence policy and improve patient care. They collaborate with healthcare providers, researchers, and industry partners to advance research and clinical trials. Their mission is to improve outcomes and quality of life for people affected by pancreatic cancer through education, support, and advocacy. Pancreatic Cancer UK is a charity dedicated to supporting people affected by pancreatic cancer, funding research, and campaigning for change. They provide information, support services, and advocate for early detection and better treatment options. The organization also funds research projects into early detection and treatments, collaborates with research institutions, and engages in policy advocacy. They operate a support line, publish educational resources, and run campaigns to raise awareness. Their activities include supporting patients and families, funding research, influencing policy, and collaborating with healthcare professionals and researchers. They have a strong focus on improving outcomes for pancreatic cancer patients through research, advocacy, and support.
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.
Metabolic Support UK
Metabolic Support UK are the leading organisation for Inherited Metabolic Disorders (IMDs), supporting thousands of people worldwide through providing individual support, building communities, and continually advocating for and empowering those living with IMDs. Since its inception in 1981, our organisation has strived to support those in the rare community, expanding new-born screening, accelerating the development of orphan drugs, and acting instrumentally in establishing EURORDIS, ensuring people living with IMDs have the best quality of life possible. Moving forward, utilising our 10 year strategy we will continue to improve the lives of people living with Inherited Metabolic Disorders, and to work collaboratively with our key partners and supporters to ensure that we achieve this. Our strategy focuses on four main pillars: Indvidual Support Building Communities Empowerment Advocacy
Cancer Support UK
<p>We provide practical and emotional support to people with cancer, during and after the treatment period.</p><p>We support people with all kinds of cancer across the UK. Our services are designed and delivered by people who have experienced cancer themselves – to improve the experience of others.</p> Cancer Support UK is a UK-based charity dedicated to supporting cancer patients and their families throughout the cancer journey. It emphasizes emotional and practical support, including free Cancer Coach programs (peer group support, digital learning, and Focus Forwards workshops) for adults who have completed cancer treatment. The organization offers Cancer Kits and workplace training, signposting, and educational resources, and invites donations and involvement through volunteering and referrals. The site notes impact such as helping 4,952 people in 2020 and highlights storytelling and shared experiences to raise awareness of its services. Core activities include running Cancer Coach programs (peer groups online or by phone, digital learning, and focused workshops), providing educational resources and materials (Cancer Types, Signposting, Resources), offering cancer-related patient support services, and broader fundraising and outreach efforts.
Mind Over Cancer
Mind Over Cancer is a charity that supports the mental health of young people diagnosed with cancer between the ages of 0 and 29, as well as their families and support networks. It aims to promote and protect mental health by providing or assisting in the provision of counselling services and mental health support programs. The organization is made up of experts in cancer care and mental health who identified a lack of mental health provisions for young cancer patients. It offers mental health support, counselling, drop-in services, support programs, and online support groups across East Anglia. The charity also engages in advocacy, fundraising, and community support activities. It has a registered charity number 1192034 and is committed to supporting young people and their families through their cancer journey.
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
Take the first step toward connection and support. Search for patient groups that match your needs today.
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