A few years ago, I did some software consulting with Novartis Oncology. A colleague from my company, who became a good friend, has subsequently taken a job at Novartis. Coincidentally, she also has a brother who is an oncologist at Dana Farber Cancer Institute. I asked her if she'd see if her brother has any insights into the disease, and also if he could find out who some of the experts are. In particular, he may have information about Steven Treon (mentioned in previous posts), who's also at Dana Farber.
She also made the excellent suggestion that I search the Novartis web sites for information about the disease. So far, I've found about a dozen pages under novartisoncology.com - more on those later when I have a chance to browse through them. I'll do the same kinds of searches at other pharmas to see what info they have, and to get more clues about who the experts are.
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