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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Verified Communities
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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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.
The Leukodystrophy Charity
Alex, The Leukodystrophy Charity is all about delivering high quality support, advice, knowledge and care for those affected by one of the leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavour to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.
Brainstrust
Brainstrust is a brain tumour charity dedicated to providing support, information, and resources for individuals affected by brain tumours. They offer patient guides, practical help, support videos, and campaigns to raise awareness and improve quality of life for patients and their families. The organization also engages in research, collaborates with healthcare professionals, and advocates for better treatment options. Their services include a 24/7 helpline, educational resources, support groups, and community events. Brainstrust aims to empower patients with knowledge and confidence to navigate their diagnosis and treatment journey, reduce fear and isolation, and promote research and policy change to improve outcomes.
Myrovlytis Trust
The Myrovlytis Trust is a charity founded in 2007 to transform the outlook for rare conditions. With an initial focus on Birt-Hogg-Dubé Syndrome and osteosarcoma, the trust strategically funds research directed towards new treatments. We want to ensure that patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common disease. Driving research, providing support and improving outcomes for patients and their families affected by rare conditions
Albinism Fellowship
Albinism Fellowship is a UK-based charity dedicated to supporting people affected by albinism and their families. Its mission includes raising awareness, providing information, advocating for individuals with albinism, and offering resources and community engagement through events, education, and membership. Core activities evidenced on the site include Understanding Albinism and FAQ for Albinism as educational resources, Other useful organisations as a resource hub, hosting events such as the Albinism Fellowship Conference, providing a contact channel via Get in Touch, and maintaining a presence through Membership, Podcast, Baby Boxes, and social media. The organization operates within the United Kingdom and has registered charity numbers in England & Wales (1196004) and Scotland (SC009443).
Hrvatska udruga leukemija i limfomi (HULL)
<p>The association works with the aim of helping patients suffering from hematological diseases, developing new research programs and treatment methods, and to this end undertakes the following activities:</p><ul><li>Organizes the treatment of patients suffering from leukemia, lymphoma, and related diseases.</li><li>Collects donations, and develops and implements programs to help patients suffering from leukemia, lymphoma, and related diseases.</li><li>Encourages new methods of treatment, and limits professional and financial assistance for these programs.</li><li>Supports programs to help patients and their families.</li><li>Supports research work in the field of etiology, therapy, and treatment of leukemia, lymphoma, and related hematological diseases.</li><li>Develops unrelated bone marrow transplantation programs in the Republic of Croatia.</li><li>Organizes seminars and consultations, and distributes information from these meetings to health and scientific institutions.</li></ul>
Fragile Society
The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At that time there were no facilities to support and inform families about any aspect of Fragile X. The charity has since grown to consist of a team of dedicated employees and volunteers, supporting thousands of individuals and families.
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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