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Old Sun Apr 1, 2007, 05:45 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Quote:
Originally Posted by choijk View Post
Any thoughts on how helpful this conference is? I been doing a lot of research on my own and I was wondering if I would gain any new information there? Thank you for your input!
The reasons to attend vary from person to person. In my experience, almost all of the hundreds who attend the annual Patient Conference comes away with something of value, e.g., a better general understanding of their disease, specific medical information, or the experience of meeting other people dealing with the same disease and seeing friends from past conferences.

Newly diagnosed patients and their families may attend the conference to hear the experts speak and for the chance to ask their questions in person. The Patient Conference always includes introductory sessions that cover the disease basics, as well as talks about the latest treatment developments. The AA&MDSIF shares news and information with all patients year-round, but those who attend the conference hear what's new in detail.

Some patients and their families attend primarily to find, meet, and talk to other patients about all facets of their illness, not just the medical side, but also the practical day-to-day issues. Given how rare bone marrow diseases are, it's often hard to find other patients in your city, so patients find each other through organizations like the AA&MDSIF or websites like Marrowforums. No two attendees have exactly the same interests and situation, so the benefits of attending are personal, but there is a strong feeling of camaraderie when you are among people facing similar challenges.

Some patients and their families, like Ruth and I, go to support others the way we were supported.

If you have only a single specific question, I don't think you should wait for a conference to ask about it. You can already ask your doctor(s), ask the AA&MDSIF, discuss it here in the forums, or do your own research. I think the benefits of the Patient Conference are from the overall experience, and that you can't predict which part of the experience will be of most benefit.
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