Patient's Day 2006 Recap

On Saturday, November 4th, the Boston Medical School of Medicine held a Amyloidosis Patient's Day. This event was open to the general public, and coincided with the Amyloidosis Symposium, a "doctor's only" event also being held in the area. I was amazed at the number and variety of people who came to the event. In all there were approximently 100 patients, caregivers and doctors from all over the world who came to meet and learn the latest news on this disease. The guest list was a veritable "who's who" of the worldwide amyloidosis community.


After a brief registration period and breakfast, the morning consisted of a number of presentations. The mood was upbeat, and we were presented with a ton of information on new treatment methods and approaches to stopping progression of the disease. Specifically, the presentation topics and speakers consisted of the following:

• Translational medicine in systemic amyloidoses (Dr. Giampaoalo Merlini)
• New developments in diagnostics and monitoring therapeutic effects (Dr. Raymond Comenzo)
• A patient's experience and viewpoint (Isabelle Lousada)
• Organ system disease and supportive care (Dr. Laura Dember)

I've scanned in the presentation materials referred to at the conference, which you can find here. Warning: This document is in PDF format and is quite big (over 6 megabytes in size). It is unannotated and may contain doctor-lingo and multi-syllable words that you may not understand!

Once the presentations were finished, we took a break for lunch, since all of the long presentations and big words made us very hungry. This was a great opportunity to grab a sandwich (or two) and mingle with other attendees about the disease and how it affected their lives. It was a pleasure to finally meet other patients and caregivers -- many which I had been only communicated with until now over the phone or via e-mail.

Once lunch was over, we broke into a number of different groups, each discussing a number of issues about the disease, such as treatment options and quality of life issues. This was another excellent opportunity to share experiences with other patients and caregivers.

Finally, all of the conference participants were treated to a sneak preview of the new care facility across the street at Boston Medical Center, which is located in the newly-erected Moakley Building. It is very nice and modern, with a lot more open spaces, larger waiting rooms, and private treatment rooms for transplant patients!


It was a long, tiring day, but it was worth it. It was uplifting to see so many other people who have been struck by this awful disease overcome come and beat it completely. It was also a pleasure to meet Dr. Merlini and Dr. Comenzo, both who are pioneers in the field. They are well known for finding new approaches in tackling this disease, and for successfully treating patients where others have failed. I had a great time at Patient's Day, and I can't wait for the next one.