1st International MECP2 Duplication Syndrome Family Conference

Texas Children's Hospital26-27 May 2011 The first 1st International MECP2 Duplication Syndrome Family Conference in Houston, Texas was attended by approximately 200 people representing 45 families. There were three major components to the conference: [1] scientific and clinical presentations, [2] data collection for ongoing research, and [3] social events for families.

Families attended the conference from Aland Island, Australia, Brazil, Canada, Italy,  Norway, and the United States. Many met other families facing the challenges of MECP2 Duplication Syndrome for the first time, and commented on the natural bonds linking families.

Dr. Dan Glaze commented on the commitment of these families, pointing out that 100% of the families agreed to participate in the research component. Dr. Melissa Beth Ramocki and Pam Albert played major roles in organizing the the highly successful conference at Texas Children’s Hospital, the largest Children’s Hospital in America.

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2 responses to “1st International MECP2 Duplication Syndrome Family Conference

  1. The conference is vital because parents get more information about this type of condition.

  2. I only wish I had known about the conference. We plan to attend the nect one. Hopfully next year they will have another so we may meet all of the Families. I will keep looking for this info!

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