Where Medical, Political and Educational Worlds Meet

…Or do I really mean “Collide”? On Sunday, Jamie and I attended the annual Neurofibromatosis Symposium conducted by Harvard’s Center for Neurofibromatosis and Allied Disorders (CNfAD). As many of you know, K was diagnosed with NF1 just a couple months after she was born. To date, her condition is relatively mild, and with luck it will remain so.

There is something strangely compelling about taking a peek into the health care sausage factory (I’m sure my buddy Paul could tell you a whole lot more on this front). At this Symposium, there was a microcosm of the health care industry. Physicians, clinicians, social workers, advocates, not-for-profit organizations, parents, patients, educators, lobbyists – with the exception of actual honest-to-goodness politicians – I think we had every category covered, with many people present who filled more than one of those roles. It’s hard to know exactly how many people attended, but at a shot in the dark guess, it was probably about 100 people.

Let’s accept as true that everyone there had an ultimate goal of helping people with NF. The manifestations of how best to reach that goal, on the other hand, varied widely.

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