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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Search Your Condition
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Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas is dedicated to supporting research into hypothalamic hamartomas (HH), a rare brain disorder characterized by lesions in the ventral hypothalamic region. The organization funds and awards research grants, facilitates international symposia, and collaborates with leading medical and research institutions worldwide. Their research initiatives include genomic profiling, functional MRI studies, animal model development, and genetic research to better understand HH etiology, diagnosis, and treatment options. They actively support scientific exchange through conferences and publish research articles. The organization also engages in advocacy, provides educational resources, and partners with medical professionals and institutions to advance HH research and treatment.
Pitt Hopkins UK
In September 2013 the members of the Pitt Hopkins UK fundraising group knew of 33 cases of PTHS in the UK. In September 2014 we were in contact with at least 40. At our PTHS UK Day in July ’14, we heard that there were about 200 diagnosed people in the UK. This meant we had contact with about 1 in 5 of all cases already diagnosed in the UK. In June 2015 we had contact with over 60 families. Some of these new families came from the DDD study. In 2020 we have contact with about 100 families in the UK and Ireland and it is estimated there are 300 families diagnosed in the UK. We know there are many more families out there both diagnosed and undiagnosed. We hope to find them. If you are one of them please contact us.
HBA Support
We are a new and growing, patient-focused organisation. Hereditary Brain Aneurysm Support (HBA Support) aims to support and inform people and families living with familial brain aneurysms or those who may be at risk. We will also raise awareness of the condition as a rare condition to improve and save lives. Working with families and clinicians alike, we will help advocate for improved support, better care and more research into this hereditary condition. HBA Support was set up in 2020 by Rebecca and Emma Middleton. After losing their mum and grandmother to brain aneurysms, Rebecca went through her own battle for diagnosis and subsequent treatment for a right MCA brain aneurysm.
Purple Our World
<p>The statistics around pancreatic cancer are heartbreaking, and quite frankly, frightening. At #PurpleOurWorld, our aim is to get the world talking about pancreatic cancer and ultimately change these horrible numbers. We want to turn our world purple!</p><p>The statistics around pancreatic cancer are heartbreaking. At #PurpleOurWorld, our aim is to get the world talking about pancreatic cancer and ultimately change these horrible numbers. We want to turn our world purple!</p> Purple Our World is a patient advocacy organization dedicated to raising awareness and funding for pancreatic cancer research. Founded in 2014, it aims to increase public understanding of pancreatic cancer symptoms, promote early detection, and support medical research initiatives. The organization collaborates with charities, government bodies, and corporate partners to amplify its impact. It organizes awareness campaigns, such as lighting landmarks purple, and engages with the community through social media, ambassador programs, and events. Purple Our World also advocates for policy change and increased research funding to improve survival rates and patient outcomes.
Cancer Laryngectomee Trust
Our aim is to promote and assist the relief of all people in the UK who have had a laryngectomy
Joining Jack
Joining Jack was officially launched with the Charity Commission by Alex and Andy Johnson, the proud parents of Jack, in July 2012 – less than nine months after their world fell apart when their son, three months short of his 4th birthday, was diagnosed with Duchenne Muscular Dystrophy, an incurable muscle-wasting condition for there is currently no cure. In 2022 Joining Jack celebrates 10 years of campaigning, fundraising, lobbying and investing in research to bring the best possible treatments with the best possible outcomes for ALL boys living with Duchenne.
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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