Sunday, October 4, 2015

LRF 2015 North American Educational Forum on Lymphoma in Brooklyn

I am on my way home from the North American Educational Forum on Lymphoma in Brooklyn, New York. Very tired, but satisfied.

Honestly I didn't go expecting  to learn much new on CLL, not that I am so aware that I think I have nothing to learn, but because this is not the forum for cutting edge news or research. It is more of a conservative recap, a  review of the state of the research and standard of care and a prediction of where the future research might be headed.

It is also mostly about lymphomas in general and less specific about CLL, though there are two good breakout CLL sessions and the general sessions are all very worthwhile.

The reason I go is to connect with old friends and meet new ones and to see what alliance the CLL Society might forge with individuals and with other patient advocacy organizations. I am also looking for the unmet needs of our community, and trying not to replicate what others are already doing well.

This is a really a meeting for patients to network and learn they are not alone. It is a great conference for newbies who are still overwhelmed with their recent diagnosis and want a helping hand and to learn they are not alone, and for those who want to learn the basics and get a glance at the future.

Expect a few brief but important audio interviews with the CLL experts and with a couple of patients to be posted soon on

But it is not so much much about breaking news, but about forming a community.

if you haven't already, please check out our CLL Society's first newsletter that came out earlier this week. I am so proud of all the patients' voices that contributed articles.

We are slowly but surely building a community.

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