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Discover support groups and communities where people share experiences, answer questions, and help each other navigate life with your condition.
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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
Action Bladder Cancer UK
Action Bladder Cancer UK (ABC UK) is a charity organization dedicated to raising awareness of bladder cancer, improving early diagnosis, and supporting research and patient support activities. They provide patient stories, educational resources, and support groups. The organization is involved in advocacy, research funding, and clinical trials. They operate primarily in the UK, with a physical address at 6 Trull Farm Buildings, Tetbury, Gloucestershire, GL8 8SQ. The charity was established to address the late detection of bladder cancer and aims to improve survival rates. They have a registered charity number 1164374. The organization engages in policy advocacy, supports patient education, and collaborates with healthcare professionals and researchers. Action Bladder Cancer UK (ABC UK) is a charity organization dedicated to supporting patients with bladder cancer, raising awareness, funding research, and providing educational resources. They operate primarily within the UK, with activities including patient support groups, research grants, educational programs, and advocacy campaigns. The organization is involved in clinical trial support, research collaborations, and policy engagement. They maintain a website with resources for patients and professionals, and have active social media presence on Twitter and Facebook. The charity was established in 2015 and is registered under charity number 1164374. They offer various support services, educational materials, and participate in policy discussions related to bladder cancer.
Cavernoma Society
The Cavernoma Society was set up in late 2018 and officially achieved its charity registration in July 2019. It has been created to support cavernoma patients, their families, carers, and friends, through the cavernoma journey. We're working towards a cure and better management for cavernoma, but in the meantime we can support you by offering guidance, reassurance, medical information, and counselling. We're member led, so we're constantly evolving our services and making sure we're delivering the best for you.
CDH UK
CDH UK is a registered charity in England and Wales (no. 1106065) and Scotland (no. SC042410). It focuses on supporting research and providing support for individuals affected by Congenital Diaphragmatic Hernia (CDH). The organization offers patient support, advocacy, and research funding to improve outcomes and awareness of CDH. It engages in public education, supports families, and collaborates with medical professionals to advance treatment and understanding of CDH. CDH UK is a registered charity focused on Congenital Diaphragmatic Hernia (CDH). The organization provides comprehensive information about CDH, including diagnosis, what to expect during pregnancy and birth, post-natal care, surgical repair, possible outcomes, and emotional support. They offer various support services such as counselling, practical help (Home 2 Hospital, Help 4 Home, Help 4 Holidays), ongoing support, and resources for transition of care. CDH UK is actively involved in research, collaborating with researchers, PhD students, and healthcare professionals on research programmes and conducting in-house studies and surveys. They also publish research articles and provide educational materials like information booklets, magazines, and explainer graphics for patients, families, and carers. The charity is supported by patrons and a medical advisory panel, and engages in fundraising activities to support its mission.
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>
Pancreatic Cancer Canada
Pancreatic Cancer Canada is dedicated to raising awareness, supporting patients and families, funding research, and advocating for improved treatments and early detection of pancreatic cancer. The organization provides patient and family support services, educational resources, and hosts events and fundraisers across Canada. It aims to increase survival rates through education, advocacy, and research funding. The organization is based in Toronto, Ontario, and operates nationwide, engaging in public awareness campaigns, clinical research support, and policy advocacy. It collaborates with healthcare providers, researchers, and community partners to advance pancreatic cancer care and research. Pancreatic Cancer Canada is a patient advocacy organization dedicated to providing support, raising awareness, and improving outcomes for individuals affected by pancreatic cancer. They offer educational resources, support services, advocacy campaigns, and information on treatment options and research. The organization engages in public awareness initiatives such as Pancreatic Cancer Awareness Month and collaborates with partners like Wellspring and AstraZeneca. They maintain a presence on social media platforms including Facebook, Twitter, Instagram, and YouTube. Their contact information includes a phone number, email, and physical address in Toronto, Canada. They focus on supporting patients and families through various programs, educational materials, and peer support, and are involved in advocacy and research activities.
PCB Foundation
The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by PBC. PBC (Primary Biliary Cholangitis) is a long-term, auto-immune condition which affects the liver.
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.
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