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.
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.
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Jordan's Guardian Angels
Jordan's Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above. It is dedicated to supporting research and providing resources for families affected by Jordan's Syndrome, including research updates, family support, advocacy, and community building. The organization also collaborates with research institutions and participates in advocacy efforts to promote awareness and policy change for rare diseases.
LHON Society
The LHON Society is a patient-led support group for LHON, a mitochondrial disease affecting the retina and optic nerve, causing loss of vision. It provides emotional support, educational resources, support groups, community activities, and research updates. The organization offers counselling services through RNIB and Macular Society, and maintains a network of support groups and community programs. It is registered with the Charity Commission for England & Wales (number 1157206). The society also engages in research activities, clinical trials, and partnerships with biotech and pharmaceutical companies. It has a presence on social media platforms including Facebook, Twitter, and LinkedIn.
National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to the identification, treatment, and cure of rare diseases. It provides resources, support, and advocacy for patients, families, and healthcare professionals. NORD also promotes research, policy development, and education to improve the lives of those affected by rare conditions. The organization collaborates with medical centers, research institutions, and industry partners to advance understanding and treatment of rare diseases. NORD offers patient assistance programs, educational resources, and hosts events to connect the rare disease community.
Independent Cancer Patients' Voice
Independent Cancer Patients' Voice (ICPV) is a charity registered by the Charity Commission for England and Wales. It focuses on patient advocacy, support, and engagement in cancer research. The organization aims to involve patients in research design, policy, and clinical trials, providing a platform for patient voices to influence cancer research and treatment. ICPV organizes courses, conferences, and advocacy activities to empower patients and improve cancer care through active participation and collaboration with researchers and clinicians.
MPN Voice
MPN Voice is a registered charity focused on supporting individuals with myeloproliferative neoplasms (MPNs). Their activities include providing information, raising awareness, supporting patients through various programs, conducting research, and advocating for the MPN community. They offer educational resources, patient support services, and organize events and forums. They also engage in clinical research and trials, provide patient stories and testimonials, and maintain a strong online presence through their website and social media channels. As a charity, they are under the auspices of Guy's and St Thomas' Foundation, with registered charity number 1160316. MPN Voice is a registered charity under the auspices of Guy's and St Thomas' Foundation. It supports patients with myeloproliferative neoplasms (MPNs) through advocacy, education, support groups, research, and awareness campaigns. The organization provides patient education resources, hosts forums and events, and collaborates with healthcare professionals and research institutions. MPN Voice also engages in policy advocacy, clinical trial support, and fundraising activities to improve patient outcomes and quality of life. It maintains a website with extensive information on MPNs, treatments, and living with the condition, and actively promotes community engagement and patient empowerment.
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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