The document summarizes the proceedings of the FIRST PWS CARETAKERS’ CONFERENCE held in Herne, Germany in 2008. Over 150 participants from 17 countries attended. There were lectures and workshops on various topics related to caring for individuals with Prader-Willi syndrome (PWS) including nutrition management, behavior management, health issues, and creating supportive environments. The workshops identified challenges individuals with PWS face and best practice guidelines for caretakers, families, and support systems. Effective communication between all parties and comprehensive, lifelong support were emphasized as key to helping those with PWS lead healthy lives.

1. A short review of the “FIRST PWS CARETAKERS’ CONFERENCE” in Herne, Germany, 2008 Hubert Soyer Norbert Hödebeck-Stuntebeck Timisoara, 24.April 2009

4. 150 participants From 17 countries

9. Environmental Supports

10. Karin Birkedal - Denmark Winfried Schillinger - Germany Jackie Mallow - USA Mary K. Ziccardi - USA Marguerite Rupnow - USA Workgroup team leaders

16. Communication with Persons with PWS

17. Workshop team leaders Anne Ogden - USA Linda Gourash - USA Steve Drago - USA Andreas Bächli – Switzerland

26. Neurological, Psychological and Cognitive aspects

37. Fitness, sports and motivation

50. Training for teachers

57. Nutrition management in PWS

66. Crisis management

75. Communication between cargivers and families

83. Environmental Supports for work with people with PWS

84. Dorthe Pedersen - Denmark Renate Scharfenberg - Germany Marguerite Rupnow - USA Dr. Hubert Soyer - Germany Jackie Mallow - USA Workgroup team leaders

88. All guidelines should take in account the assessment of the individual to assure health and safety to promote quality of life. The individual’s opinion should be taken into account when following these guidelines whenever possible. Communication needs to be ongoing between all individuals involved in the person’s care in order to be achieve success. Guidelines for best practices

93. Psychological aspects

101. www.pws-caretakers-conference.de