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.
OUTpatients
<p>Live Through This exists to support and advocate for our Lesbian, Gay, Bisexual, Transgender, Intersex and Queer communities when they are affected by cancer. Our goal is to help patients, survivors, partners and caregivers feel welcome and supported in cancer services. Through peer support, education, and bespoke resource production, it is our mission to transform cancer care into a more inclusive environment for everyone.</p>
The Leukodystrophy Charity
Alex, The Leukodystrophy Charity is all about delivering high quality support, advice, knowledge and care for those affected by one of the leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavour to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.
Contact
We were founded in the 1970s by families of disabled children, who recognised that even if their child’s conditions were different, they shared a common experience – of being a family with a disabled child. They understood how important it is to support each other. A lot has changed since then but some things haven’t changed nearly enough. There is a desperate lack of services and support for the 620,000 parents in the UK who care for a disabled child. As a result, families face a huge range of challenges and many feel isolated and alone. Coping with extra financial costs and practical challenges can put an enormous strain on daily life, with families more likely to face emotional issues, stress and anxiety. We are here for all families with disabled children – supporting families, bringing families together and helping families take action for others. Our vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them.
The Aarskog Foundation
The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited. The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this RARE Genetic condition. Addressing Aarskog Syndrome is vital in order for it to be recognised as a disability across all governing bodies to ensure all Aarskog patients have access to the same resources as any other person. Patients living with Aarskog Syndrome come together through The Aarskog Foundation in a structured environment to create an Aarskog community and a voice through advocacy and exchange experiences. To this end we aim to unite, expand and put Aarskog Syndrome on the agenda of organisations and institutions both in the UK and across the world.
PIP UK
There are many children born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community. At PIP-UK we want to change this situation and make sure people get access to the right information for them, at the right time! Our blog has videos on all sorts of things like how to tie shoelaces. There are stories which demonstrate that Poland Syndrome should not hold you back from anything!
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.
Start Your Journey
Take the first step toward connection and support. Search for patient groups that match your needs today.
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