Mission
Patient Communities for People with Rare Diseases
We build patient communities for people with rare diseases. Our mission is create a patient community for each rare disease known. Our mission is to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.
A Message From Ben
"I'm forever thankful to the neurosurgeon for saving my life. However, each time I left the doctor's office or the hospital during my treatment and recovery from the brain hemorrhage, I felt lost and lonely. How am I supposed to know what to do next? The first few months after my brain surgery was an emotional roller coaster.
The turning point came when I was put in touch with a friend of a friend who had been through a brain hemorrhage like mine and knew what it was like. We spoke for a long time and he answered the million questions that I had about treatment and recovery. I wanted desperately to connect with others who also had an AVM brain hemorrhage and talk more about the emotional aspects of this life-changing experience.
I was able to put together a good enough web site to invite a few people from a mailing list to come join me in an open discussion of what we were going through. I was so thankful to connect with others who knew what I was going through and members who joined felt the exact same way. It became apparent as the community doubled in size, again, and again, that we had created something special.
We wanted to share that emotional connection with patients of other rare diseases, so we created Ben's Friends."
--Ben Munoz
Communities
Aicardi Syndrome
Adrenoleukodystrophy (ALD)
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Chiari Malformation
Crohn's Disease
Fibromyalgia
Metastatic Breast Cancer
Myositis
Tourette's Syndrom'
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
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Members
8794 lives changed...and counting.
What Members Are Saying
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