About > Mission
Patient Communities for People with Rare Diseases
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
Real Lives Changed
Communities
27 communities launched... and counting.
· Acute Disseminated Encephalomyelitis (ADEM)
· ADHD/ADD
· Adrenoleukodystrophy (ALD)
· Arteriovenous Malformation (AVM)
· Ataxia (International)
· Ataxia (U.S.A.)
· Atrial Septal Defect
· Autism
· Brain Aneurysms
· Charcot Marie Tooth (CMT)
· Chiari Malformation
· Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
· Crohn's Disease
· Disabilities
· Eagle Syndrome
· Erythromelalgia
· Fibromyalgia
· Glossopharyngeal Neuralgia (GPN)
· Hepatitis C
· Lupus
· Multiple Myeloma
· Myositis
· Primary Sclerosing Cholangitis (PSC)
· Psoriatic Arthritis (PsA)
· Synovial Sarcoma
· Trigeminal Neuralgia (TN)
· Von Willebrand's Disease (VWD)
Are you in crisis? Please call 1-800-273-TALK
Sponsor a Community
Ben’s Friends is made up of an army of volunteers and relies on donations to fund operations.
Make a One-Time Donation
Your one-time donation goes directly towards supporting our patient communities.
4 Quick Ways You Can Help
1. Tell a friend or relative that we may have a community for them. Our communities are listed on the left side of this page.
2. Tell journalists and bloggers about our story and our mission.
3. Help us launch a new patient community for someone you know. Email info@bensfriends.org.
4. Help our Google rankings by linking to BensFriends.org or any community from any web site you can.
