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.
Myrovlytis Trust
The Myrovlytis Trust is a charity founded in 2007 to transform the outlook for rare conditions. With an initial focus on Birt-Hogg-Dubé Syndrome and osteosarcoma, the trust strategically funds research directed towards new treatments. We want to ensure that patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common disease. Driving research, providing support and improving outcomes for patients and their families affected by rare conditions
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.
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
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.
Joining Jack
Joining Jack was officially launched with the Charity Commission by Alex and Andy Johnson, the proud parents of Jack, in July 2012 – less than nine months after their world fell apart when their son, three months short of his 4th birthday, was diagnosed with Duchenne Muscular Dystrophy, an incurable muscle-wasting condition for there is currently no cure. In 2022 Joining Jack celebrates 10 years of campaigning, fundraising, lobbying and investing in research to bring the best possible treatments with the best possible outcomes for ALL boys living with Duchenne.
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.
Start Your Search