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.
Behçet's UK
Behçet's UK is a patient advocacy organization dedicated to supporting individuals affected by Behçet’s disease. They provide information, support services, and promote research to improve diagnosis and treatment. The organization operates a helpline, offers patient education resources, and runs support groups and events across the UK. They are involved in advocacy activities to raise awareness and influence policy related to Behçet’s disease. The organization maintains a website with comprehensive information and links to social media platforms. They also coordinate with national centers of excellence for specialized care. Behçet's UK is a charity dedicated to supporting individuals affected by Behçet's disease, a rare and complex autoimmune condition. The organization provides patient support, promotes research, and raises awareness about Behçet's disease. It offers various programs including support groups, educational resources, and advocacy activities. Behçet's UK collaborates with medical professionals and research institutions to improve patient care and outcomes. The organization also hosts conferences, surveys, and community events to engage with patients and healthcare providers. It maintains a helpline, social media presence, and partnerships with other health and advocacy groups. The charity is committed to advancing understanding and treatment of Behçet's disease through research and policy influence.
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.
Kidney Cancer UK
Kidney Cancer UK is the UK’s leading kidney cancer charity. We seek to reduce the harm caused by kidney cancer by increasing knowledge and awareness, providing patient information and by supporting research into the causes, prevention and treatment of the disease
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).
Colorectal Cancer Alliance
To empower a nation of allies who work with us to provide support for patients and families, caregivers, and survivors; to raise awareness of preventive measures; and inspire efforts to fund critical research.
Cure Mito Foundation
The Cure SURF1 Foundation was founded in 2018 by a group of families determined to fight for our children’s lives. Each of us has a young child diagnosed with SURF1 Leigh syndrome. Each of us has been told by doctors that there is no treatment, no cure, and no hope. And each of us has refused to accept this as a final answer. In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to expand our efforts and changed the name of our foundation from the Cure SURF1 Foundation to the Cure MITO Foundation. Our primary focus is advancing research towards a cure for Leigh syndrome and eventually for mitochondrial disease as a whole. A successful outcome will mean not only hope for our own children, but also life-saving treatments for future generations impacted by this disease.
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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