In May, PWHO hosted the first International Prader-Willi Syndrome Association Professional Provider Caregiver Board (PPCB) Meeting. The board was established by the IPWSO Board of Directors during the Taiwan Conference with a appointed group of professional experts. The Board members arrived from Chile, Germany, Israel, New Zealand, and the USA. One member from Denmark unfortunately was unable to participate but she was certainly missed. Future hopes are to have members representing Asia and Africa. Together the mission of this international leadership group is to work together to support, educate, and train those who care for individuals with PWS across family, residential, educational, vocational, and community settings. During the visit we had the opportunity to explore future goals that support the “Best Practice Guidelines” established during the 2008 & 2009 Herne, Germany conferences and the collaborative work of a large number of international experts. Plans to secure financial support for reaching out to countries with limited resources and further research and projects were just a few of the many topics generated and discussed during the meeting . Establishing support systems and training objectives for future years highlights the amount of work which needs to be done to ensure quality care is established internationally for individuals diagnosed with PWS. For PWHO it was a true pleasure to share our part of the ORP Family of Companies that supports individuals diagnosed with PWS with a tour of three of our PWHO homes, Pantheon Industries, Pantheon Home Grown Farms & ODTC. Several of our residents made the board members feel especially welcomed with their signs, cards, hand made crafts and jewelry. Everyone also received a candle from Pantheon that they could return home with as a reminder of their visit here. It was truly an honor to be a part of such a passionate group of experts who all have a common goal to create supports for caregivers and families which enhance the lives of those affected by Prader-Willi syndrome.
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