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From Where I Sit


We are One in How Many?

Here's a very short clip from the 2013 Expert Meeting where Dr. Sven Krengel, who has risen to the top of the field especially when it comes to a comprehensive knowledge of the literature and applying it to the world of congenital melanocytic nevi (CMN), debunks one of the many myths of CMN, that often quoted number "one in 500,000."

Dr. Krengel has authored the new consensus-based classification scheme for CMN which we hope will catch on and that all doctors will start using, so that they can all describe CMN the same way for the first time.

In this clip, he challenges everyone in attendance at the Expert Meeting to "officially forget this number."  Or, as Dr. Heather Etchevers (who organized and hosted the Expert Meeting) explained recently:

"The numbers are only ever approximations ... (a) it depends on what size we're discussing, and (b) we think that large and giant CMN are more common than initially estimated because those early figures were often based on who showed up of their own free will with their babies in the doctors' offices ... Just like there was an initially reported sex bias because parents of little baby girls were more likely to seek treatment than those of little boys."

There are a lot of factors at play.

Nevus Merchandise Available Now!

Goodness. It's that very crazy time of year. We had hoped to get our Nevus Merchandise Store up and running sooner, in fact, it's been built for nearly 2 weeks. Since then we have been taking crash courses in PayPal, because if it was not one thing it was another. Last night we finally got it to where yo Read more...

Weekend of Thanksgiving - Sunday

We’ll close our seven-day series by acknowledging a central facet in the gem that is Nevus Outreach: Its management. At the very center of any IRS-recognized non-profit organization is a Board of Directors, whose job it is to shepherd the organization. In the early days, this Board was all there was to handle everything. It was made up of those of us who founded N Read more...

Weekend of Thanksgiving - Saturday

Saturdays are always special days, and people who support Nevus Outreach are always special people, so it seemed appropriate to remember this most vital link in our chain on a day that packs some punch!

The most frustrating thing about trying to garner support for a rare disease is that the affected people are usually the only people who get how important it is, Read more...

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     Mark Beckwith

Executive Director
Nevus Outreach

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