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.
International Prader-Willi Syndrome Organisation
Since 1991 IPWSO has supported national PWS associations, as well as people with PWS, their families and the professionals who work with them. Our vision is a world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals. We are working to achieve this goal by uniting the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS.
Project Sebastian
Project Sebastian is a patient advocacy organization that provides support groups, individualized therapies, education, and resources to families affected by rare diseases. Its mission centers on compassion, education, and advocacy, aiming to empower the rare disease community through group support meetings, counseling, and access to resources. The organization emphasizes building a network of professionals, scientists, educators, caregivers, and families, with the goal of funding vital projects and increasing awareness for rare diseases. It engages in ambassador initiatives, Rare Disease Day activities, and partnerships with charity organizations. Programs highlighted include caregiver and patient support, educational resources, and community events. The organization lists several charity partners and resources in its materials and maintains an online presence with a resources page, support groups, and fundraising efforts (donations). The main activity appears to be community-based support and education for all families affected by rare diseases, primarily operating from the United States (Valencia, California address).
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.
Epilepsy Sparks
Epilepsy Sparks is a platform providing information, research, and resources related to epilepsy, neurology, neuroscience, and genetics. It aims to support individuals affected by epilepsy and related neurological conditions through education, research involvement, and advocacy. The organization is part of Media Evolution Ltd, based in London, UK. It offers various resources including facts, glossaries, research projects, and conferences. The website emphasizes that information is not a substitute for personal medical advice and encourages consultation with qualified clinicians.
Neuromuscular Disease Foundation
The Neuromuscular Disease Foundation (NDF) is a nonprofit organization dedicated to supporting research, education, and advocacy for neuromuscular diseases, including GNE Myopathy. It provides patient resources, support groups, educational programs, and funds research initiatives. NDF aims to improve the quality of life for individuals affected by neuromuscular conditions through community engagement, awareness campaigns, and collaboration with medical and research institutions. The foundation also offers assistive devices, patient registries, and participates in clinical research and policy advocacy to advance treatment options and patient care.
Children & Young People's Cancer Association (CCLG)
CCLG - The Children & Young People's Cancer Association is a charity dedicated to supporting children, young people, and their families affected by cancer. They focus on research, early diagnosis, advocacy, education, and support services. They operate a wide range of programs including public awareness campaigns like Child Cancer Smart, fundraising initiatives, and professional guidance to improve cancer diagnosis and treatment in children and young people. They also lead research projects, collaborate with healthcare professionals, and influence policy to improve outcomes for young cancer patients. CCLG - The Children & Young People's Cancer Association is a registered charity in England, Wales, and Scotland dedicated to supporting children, young people, and their families affected by cancer. The organization provides information resources, advocacy, research, and support services. It operates from Leicester, UK, and has a focus on childhood and young people's cancers, including types such as leukemia, brain tumors, and other pediatric cancers. CCLG collaborates with medical research charities, offers educational materials, and engages in policy and advocacy activities to improve cancer care and outcomes for young patients.
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