International CdLS Conference Recap

By Tonie Kline, CdLS Foundation Medical Director

The international CdLS meeting had several parts. A scientific symposium was held the first day at the University of Lisbon, coordinated by Rarissimas, the private facility for rare diseases, run by Paula Costa, the director of CdLS Portugal. It covered both clinical and research aspects of CdLS and cohesion, as well as general topics related to individuals with neurodevelopmental disabilities. Members of the Scientific Advisory Council (SAC) and the World-wide Federation attended, as well as local professionals and some families. 

 The next day, all-day meetings of the SAC and the Federation were held at Casa dos Marcos, the hospital and facility for individuals with intellectual disabilities, founded by Paula Costa in honor of her son, Marco, who had CdLS. Much progress was made during both meetings (see below). That evening, we took bus and catamaran ferry to arrive at a coastal town, Troia, where the family meeting was held for the next two days. Families from Portugal, France, Brazil, the Netherlands, Germany, and the United Kingdom were in attendance. There were talks and workshops given by the SAC including the four of us who attended from the United States: myself, Doug Clemens in pediatric dentistry, Natalie Blagowidow in reproductive genetics and Mary Levis in psychology/education. Over delicious meals as well as during consultations we were able to meet the families and the other professionals. The gala dinner organized by Paula included the U.S. ambassador and his wife, as well as the First Lady of Portugal and other dignitaries, all of whom gave speeches. The ambassadress was particularly intrigued by the Foundation and the children. The next international meeting will be held in Brazil, likely in July 2017. 

 Regarding the SAC, all members in good standing on our Clinical Advisory Board are invited to participate, although in general no funding is available for travel unless the host country has a need for a specific specialty. You must have participated in our national meetings and have attended at least one CAB meeting in the four years preceding the international meeting, and either do clinical work or research on CdLS. Please let me know if you are interested. Also, the SAC will be designating international centers of excellence once criteria are set.


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