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.
Why Use Phormulate?
Verified Communities
We vet every organization to ensure you find safe, legitimate support networks and advocacy groups.
Global Reach
Access support groups from around the world, or find local communities near you that speak your language.
Patient-Centric
Built with patients in mind, prioritizing your privacy, ease of use, and meaningful connections.
How It Works
Finding the right support group is simple. We've made it easy for you.
Search Your Condition
Enter your health condition or diagnosis. Our smart search instantly finds relevant support organizations.
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.
Action Kidney Cancer
<p>The United Kingdom’s only patient-led kidney cancer charity</p> Action Kidney Cancer is the UK’s largest and most active patient-led kidney cancer charity. It provides support, information, and a caring, knowledgeable community for patients, survivors, and those affected by kidney cancer. The organization offers a helpline, patient support forum, community map, patient groups, and patient information days; hosts educational resources such as essential guides to kidney cancer, information on treatments, help sheets, and materials to support shared decision-making; and facilitates campaigns, fundraising, and involvement in advocacy. It is a registered charity in England, Wales, and Scotland, with headquarters in Manchester, United Kingdom, and maintains partnerships and resources to assist kidney cancer patients and families, including online and in-person programs.
Action for XP
Action for XP is a UK-registered charity focused on Xeroderma pigmentosum (XP). The organization provides patient and family support, awareness, education, resources, and advocacy related to XP. It offers project-based initiatives and several support and information hubs to assist people affected by XP, including Project Breakaway and Little Ted, as well as services such as Supporting You, the Action Advice Hub, and the Schools Hub. The charity aims to connect the XP community, raise awareness, share XP-related information, and provide accessible resources and outreach through its website and programs. Headquarters are listed in Aberdeenshire, United Kingdom, with charity registration details noted (Charity No SC045465). Action for XP is a charity dedicated to supporting individuals and families affected by Xeroderma Pigmentosum (XP). The organization operates across the UK and internationally, providing free services such as UV protection guidance, protective equipment, counselling, and family support. They organize community events, awareness campaigns, and collaborate with medical professionals and industry partners to advance research and improve quality of life for those with XP. The charity also engages in educational initiatives, advocacy, and fundraising activities to sustain and expand their support network. They have a strong focus on patient-centered care, education, and raising awareness about XP and related rare genetic conditions.
Australian Pancreatic Cancer Genome
The Australian Pancreatic Cancer Genome Initiative (APGI) is a global research enterprise of over 100 scientists, clinicians and allied health professionals involved in pancreatic cancer research and care. The APGI has mapped the genome of pancreatic cancer in a landmark effort as part of Australia’s contribution to the International Cancer Genome Consortium (ICGC). This fundamental understanding of the genetic underpinnings of Pancreatic Cancer will accelerate the evolution of pancreatic cancer care into the molecular age of oncology. The APGI’s world-class BioResource – biological samples coupled with comprehensive clinical and genomic data – is aiding research worldwide in ongoing discovery and development through quality research and strategic collaborations.
OnkoMajak
Our mission is to raise the awareness of the general and specialist public about oncological diseases, their prevention, early diagnosis and treatment options. The goal is an informed and proactive public. We strive to reduce the incidence and mortality of oncological diseases not only through interactive educational experiences within the Gut Tour and Healthy Lungs roadshows. The domain of the roadshow is an inflatable model of the colon and lungs, which helps to understand the risks and causes of various diseases.
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.
Fragile Society
The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At that time there were no facilities to support and inform families about any aspect of Fragile X. The charity has since grown to consist of a team of dedicated employees and volunteers, supporting thousands of individuals and families.
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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