Dear Friends,

I would like to announce an exciting new IPWSO project, the First International PWS Caretaker’s Conference, which will take place June 3-5, 2008 in Herne , Germany in cooperation with Regens Wagner Absberg and Diakonische Stiftung Wittekindshof (both institutions with PWS residential options).

The International PWS Caretaker’s Conference will be a symposium for PWS Experts dealing on an everyday basis in the care of people with PWS.  Caretaking could be within a group home, supportive living, respite, rehabilitation or other PWS programs. Although it will be open to interested individuals as observers, the persons participating would need to be a professional involved in direct care on an ongoing basis.

This conference will be a dynamic working body developing global “standards and guidelines of care.” There will be three presentations (ethics, weight management, and behavioral issues) and 10 workgroups on basic caretaking themes specific to PWS. In most cases we will be looking at the physiological and psychological reasons behind the theme in order to come to a conclusion on the best way to handle the situation.  Each workgroup will have a facilitator who will make a short presentation on the chosen particular aspect and this will be modulated by the working group.   The end product will be a published booklet with abstracts, consensus statements on the elements of global “best practice” in caretaking of people with PWS, recommendations, and topics for future consideration.

We envision this as the skeleton, and a stepping stone or impetus for our member countries to develop PWS BEST PRACTICE STANDARDS OF CARE according to their own culture and realities. This conference would be the foundation and would shape an international network for continual discussion and refinement in the future. 

Our venue will be the Akadamie Mont -Cenis Conference Center www.akademie-mont-cenis.de. For more information, please check our dedicated conference site www.pws-caretakers-conference.de.

For more information

All my best wishes,

Pam

Pam Eisen
President
International Prader-Willi Syndrome Organization