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Discover support groups and communities where people share experiences, answer questions, and help each other navigate life with your condition.
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Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
Usher Syndrome Ireland
Usher Syndrome Ireland is a charity founded by people with Usher syndrome, for people with Usher syndrome. It aims to support, inform, empower, and build a community for those affected by Usher syndrome. The organization raises awareness, funds research, advocates for affected individuals, and creates a supportive community. It provides information, support, and advocacy for people with Usher syndrome and their families. Usher Syndrome Ireland is a patient organization dedicated to providing information, support, and resources for individuals and families affected by Usher syndrome. They offer educational materials, support services, and advocacy to improve quality of life and access to care. The organization collaborates with various health and social services to promote awareness and research. They maintain a website with extensive resources, including research news, patient registries, and community support programs. Their mission is to empower those affected by Usher syndrome through education, support, and advocacy, fostering a strong community and advancing research efforts.
Ellen MacArthur Cancer Trust
The Ellen MacArthur Cancer Trust is a national charity that inspires young people aged 8-24 to believe in a brighter future living through and beyond cancer.
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a non-profit alliance of patient organizations in Europe dedicated to empowering, supporting, and advocating for people living with rare diseases. It coordinates network activities, policy initiatives, information and support for patients and families, and collaborates with partners to advance rare disease research and policy.
Arbeitskreis der Pankreatektomierten e. V.
The Arbeitskreis der Pankreatektomierten e. V. (AdP) is a self-help organization founded in 1976, dedicated to supporting patients with pancreatic diseases, especially pancreatic cancer. It aims to promote health and rehabilitation for those who have undergone partial or total pancreatectomy, as well as non-operated pancreatic disease patients. The organization provides current information, facilitates experience exchange, and conducts educational work. It has over 1,550 members and collaborates with medical professionals and organizations. The AdP offers support for diagnosis, therapy, and follow-up, and advocates for early detection and research in pancreatic diseases. It is based in Bonn, Germany, and is supported by the German Cancer Aid. The Arbeitskreis der Pankreatektomierten e. V., also known as ADP e.V., is a patient self-help organization based in Bonn, Germany. It focuses on supporting individuals who have undergone pancreatic surgery, providing resources, advocacy, and community support. The organization offers informational documents, support networks, and educational materials for patients and their families. It engages in activities such as maintaining a forum, hotline, and distributing downloadable resources. The ADP e.V. collaborates with medical professionals and other organizations to improve patient care and awareness of pancreatic diseases. Its activities include advocacy campaigns, patient education initiatives, and supporting research collaborations. The organization is committed to empowering patients through information and community engagement, aiming to improve quality of life and treatment outcomes for those affected by pancreatic conditions.
Chordoma UK
Over the last few years, Professor Flanagan’s research team and colleagues have taken tumours from patients treated at RNOH (with their consent and ethical approval), and 5 chordoma cell lines have been established from these tumours. 3 other cell lines have been generously donated from other researchers. This means that for the first time, a reasonable number of cell lines are available to screen against a large number of drugs / compounds (1000-2000), some of which are already used in the treatment of other tumours, and some of which are in development. By studying the effect of 100s of drugs on the chordoma cell lines we should be able to identify what induces the expression of brachyury. If can identify this/these, we have other potential targets to which drugs can be developed. We will also investigate if we can ‘silence’ brachyury in the chordoma cells using a virus. Research using these cell lines is has recently commenced and it is hoped that the outcome of this work will have an impact on the way all chordoma patients are treated worldwide.
TEB Selbsthilfe Tumore und Erkrankungen der Bauchspeicheldrüse
The TEB Selbsthilfe is a non-profit organization founded in Baden-Württemberg, Germany, dedicated to supporting patients with tumors and diseases of the pancreas. It provides informational materials, brochures, patient support programs, advocacy activities, and educational resources. The organization collaborates with medical professionals, offers a helpline, regional groups, and participates in policy and research initiatives. It is supported by the Krebsverband Baden-Württemberg and is a founding member of the World Pancreatic Cancer Coalition. The organization aims to improve awareness, support, and research for pancreatic conditions.
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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