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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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
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.
Balls To Cancer
Since 2011 Balls to Cancer has been there to support sufferers and families dealing with cancer. We host many fundraising events and awareness campaigns with many famous faces to help bring awareness to male cancers. Balls To Cancer is a UK-based charitable organization established in 2011 that supports sufferers and families dealing with cancer. It hosts fundraising events and runs awareness campaigns, often featuring famous faces, to raise awareness of male cancers.
Action Parkinson asbl
Action Parkinson asbl is a patient advocacy organization based in Brussels, Belgium, dedicated to supporting individuals with Parkinson's disease. The organization provides information, support services, and advocacy activities to improve the quality of life for patients. It offers patient education resources, support groups, and organizes activities and events to raise awareness and promote research. The organization collaborates with healthcare professionals, researchers, and other stakeholders to advance understanding and treatment of Parkinson's disease. It maintains a website with comprehensive information on symptoms, causes, diagnosis, and treatment options, and actively engages in policy advocacy and community outreach. Action Parkinson is a patient advocacy organization based in Brussels, Belgium, dedicated to supporting individuals with Parkinson's disease. The organization provides information, advocacy, and support services for patients and their families. It promotes awareness of Parkinson's disease, offers educational resources, and facilitates multidisciplinary care involving neurologists, physiotherapists, speech therapists, occupational therapists, psychologists, social workers, and pharmacists. The organization collaborates with various partners, including healthcare providers and community groups, to improve the quality of life for those affected. It engages in advocacy activities to influence health policies and supports research initiatives related to Parkinson's disease. The organization maintains a website, social media presence, and publishes reports and brochures to inform the public and patients. It was established in 2019 and operates primarily in Belgium, with a physical headquarters in Brussels and activities in Ixelles.
Huntington's Disease Youth Organization
HDYO is the only organization who focus solely on supporting young people impacted by HD around the world. Will you help us? HDYO offers resources, peer support, and connects young people impacted by Huntington's Disease globally. They provide educational materials, support groups, and advocacy initiatives to improve the lives of affected individuals and their families. The organization also engages in research support and collaborates with various partners to enhance awareness and support services.
Pancreatic Cancer Action
What we do: Early diagnosis Subscribe Taking Action in Scotland The team at Pancreatic Cancer Action Current vacancies Contact Us Support from Trusts and Foundations Financial information Your privacy About Pancreatic Cancer Action We are the only UK charity that specifically focuses on improving pancreatic cancer survival rates through early diagnosis in everything we do. We raise awareness of the symptoms and risk factors of pancreatic cancer across the year. Join us by raising awareness of pancreatic cancer and by sharing your story! Founded by a pancreatic cancer survivor, Ali Stunt, who proves that survival is possible, Pancreatic Cancer Action’s vision is a day when everyone is diagnosed early and survives pancreatic cancer. Quite simply, we know that pancreatic cancer can be detected early, and as long as we are here and continue to be supported, we will do all we can do to make sure this happens more and more.
The Ehlers Danlos Society
The Ehlers Danlos Society is a global organization dedicated to improving the lives of people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The society provides education, research funding, clinical resources, and advocacy to support patients, families, and healthcare professionals. It aims to increase awareness, promote diagnosis, and advance research to find better treatments and ultimately a cure for EDS and HSD. The society also offers support groups, patient stories, and community engagement initiatives to foster a strong network of individuals affected by these connective tissue disorders. The Ehlers Danlos Society is a patient advocacy organization dedicated to improving the lives of individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The organization focuses on research, education, support, and advocacy to raise awareness and improve diagnosis and management of these connective tissue disorders. It offers patient support programs, educational resources, and promotes research collaborations. The Society also engages in policy advocacy and provides a platform for patient stories and community engagement. It operates globally, with a focus on patient-centered initiatives, and collaborates with healthcare professionals, researchers, and other organizations to advance understanding and treatment of EDS and HSD.
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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