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.
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We vet every organization to ensure you find safe, legitimate support networks and advocacy groups.
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Access support groups from around the world, or find local communities near you that speak your language.
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How It Works
Finding the right support group is simple. We've made it easy for you.
Search Your Condition
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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.
Unique
The Rare Chromosome Disorder Support Group (Rare Chromo) is a UK-based charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. They provide information, support, and advocacy for affected individuals, their families, and professionals. The organization aims to raise awareness, promote research, and improve services related to rare genetic conditions. They organize events, webinars, and produce educational resources to enhance understanding and support for the community. Their activities include facilitating research collaborations, providing a helpline, and developing informational materials to empower affected families and raise public awareness. Unique is a small charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. It provides information guides, family resources, and promotes awareness through events and research collaborations. The organization offers free membership to families, professional membership for clinicians and researchers, and maintains a confidential offline database of affected members. Unique advocates for affected individuals, supports research, and works to improve understanding and management of rare genetic conditions. It also provides educational materials, support groups, and participates in policy and research initiatives. The organization is based in Surrey, UK, with a physical address at The Stables, Station Road West, Oxted, Surrey, RH8 9EE, and has a global membership.
Batten Disease Family Association
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure. The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
The Myeloma, Lymphoma & Leukaemia Foundation of Barbados
<p>Originally founded in February 2002 as the Myeloma Foundation and Support Group of Barbados, we broadened our scope in May of that year to include Lymphoma and Leukaemia and became known as The Myeloma, Lymphoma and Leukaemia Foundation of Barbados. We are registered as Charity #579. The Foundation finds its genesis in the fact that the experiences and needs of persons afflicted with blood-related cancers are extremely complex and far more unique than those afflicted with more well-known cancers.</p><p>Our mission is to provide comprehensive support to persons suffering from Myeloma, Lymphoma, Leukaemia and other blood-related disorders. We are based in Barbados and therefore cater primarily to Barbadians, although all are welcome.</p><p>The Main Objectives of the Foundation include:</p><ul><li><strong>Support:</strong> To provide a support network for sufferers of blood-related cancers and their families.</li><li><strong>Lobbying:</strong> To act as an effective lobbying agent on behalf of such persons to influence government policy on matters pertaining to blood-related cancers.</li><li><strong>Education:</strong> To educate the Barbadian public about blood-related cancers.</li></ul>
Chris Lucas Trust
The Chris Lucas Trust funds research into childhood cancer, specifically rhabdomyosarcoma, with the aim to find a cure through world-class research. The charity was set up in memory of Christopher Lucas who died from rhabdomyosarcoma in July 2000. They engage in fundraising activities, share patient stories, and advocate for reforms in clinical trials for children.
Ataxia and Me
A non-profit organisation founded by a patient, and run by patients, helping to maximise the patient voice within the medical, health and pharma community
Skin Cancer Foundation
The Skin Cancer Foundation is dedicated to education, prevention, early detection, and prompt, effective treatment of skin cancer. It is a nonprofit organization that relies on donor funds. The Foundation promotes sun safety and skin cancer awareness through public education campaigns, professional training, and research support. It also provides resources for skin cancer detection and prevention, including educational materials, screening programs, and advocacy for sun protection policies. The Skin Cancer Foundation is a nonprofit organization dedicated to education, prevention, early detection, treatment, and research of skin cancer. It provides resources for patients, medical professionals, and the public, including treatment information, prevention tips, and support services. The Foundation also advocates for policies to reduce skin cancer risk and promotes sun safety awareness. It collaborates with healthcare providers, researchers, and community organizations to advance skin cancer awareness and care.
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
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