Developing A Worldwide Community for People With Rare Diseases

In 2006 twenty-nine-year-old Austinite Ben Munoz of Dallas, Texas experienced such a severe headache and dizziness that he drove to the hospital and underwent surgery several hours later.

Ben was diagnosed with arteriovenous malformation (AVM) where blood vessels interfere with blood flow in various parts of the body. The NIH estimates about one percent of the population have AVM.

In Ben’s case, the AVM occurred in his brain and caused a brain bleed. Ben told MSN interviewers that there had been no previous symptoms nor were there any indications on scans.


Among Ben’s readings after his recovery in 2008, he came upon the book Tribes authored by Seth Godin. The book discussed the development of communities that are emerging as a result of the internet. It occurred to him that there are very few support groups for the thousands of people with rare diseases such as AVM.

Ben still needed follow-up after his operation but was unable to find support groups that could lead him to others with AVM. Ben decided to use his software experience from business school and developed the website that showcased his message board allowing people to sign up. He depended on his family and friends to join. In no time the members grew to 250.

People began to set up their own message boards such as ataxia or undiagnosed facial pain. Currently, there are forty rare disease message boards with over 200,000 views each month worldwide. Ben’s message boards are called simply: Ben’s Friends.

The Community

Ben explained that it is difficult to connect with other rare disease patients. He said there might be only a few such people at one location. One contributor, Richard Danvers of the UK, found Ben’s site in 2016 when he self-diagnosed AVM from severe pulsing. A doctor confirmed it was AVM and Richard posted that he was getting an MRI in a few days. Many people responded and Richard was extremely grateful for the encouragement he received.

Richard is now a moderator for the site and finds the work especially rewarding. There are now about nine thousand AVM Survivor users worldwide.

Ben reminds everyone that the site does not allow medical advice. He added that about 99% of the sites simply support people. The concept is that they are there to listen and reassure others with posts declaring that they are all fighting the same disease.


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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