Category Archives: incidence/Prevalence

How many children and adults have MECP2 Duplication Syndrome?

6 February 2012 This is a question that is frequently asked, but it is not simple to answer. There seems to be a lot of misunderstanding, and many believe that there have only been about 100 confirmed cases diagnosed so far. In fact there are a lot more than that, and no one has a precise count. In earlier years, 2005 to 2007 or 2008. There were only a few labs that were testing for MECP2 Duplication and so it might have been possible to simply add up totals from these labs to get a number. Since then, however, the number of labs doing this testing has grown rapidly and the number of tests performed has sky rocketed. There can be no doubt that the total number of cases diagnosed worldwide is now more than 1,000 and may be as high as several thousand. This number is increasing every day. Continue reading

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Welcome to MECP2 Duplication Syndrome Awareness Month

Spread the news in July

July 2010 is officially designated as MECP2 Duplication Syndrome Awareness Month in the State of Pennsylvania, but it would be great if the rest of the world followed the lead of the Keystone state and joined in. Individuals and families affected by this condition need to raise public awareness as a first step toward improving treatment and quality of life.

So, there are two simple things that you can do to help:

One, take a few minutes to learn something about this condition.

Two, take a few more minutes to share what you know with one or two other people.

Here are 31 facts about MECP2 Duplication syndrome one for each day in July.  Please consider sharing one or a few of these facts with two or three people you know and encouraging them to do the same during the month of July 2010. Continue reading

MeCP2 Duplication: Rare or Common?

14 June 2009 – Edmonton, AB, Canada From a parent’s perspective one of the strange things about MeCP2 Duplication syndrome is that it has been described both as rare and common. How rare is it? Continue reading