- Meet Consumers/Patients
|New International Alliance of HPEN Consumer Groups|
New International Alliance of HPEN Consumer Groups
LifelineLetter, November/December 2015
Joan Bishop, Oley Foundation Executive Director, and Darlene Kelly, Oley’s Science and Medicine Advisor, attended a meeting of the European Society for Clinical Nutrition and Metabolism (ESPEN) in Lisbon, Portugal, this fall, where they and representatives from other nutrition support consumer groups hosted an exhibit for PACIFHAN, the newly organized Alliance of Patient Organisations for Chronic Intestinal Failure and Home Artificial Nutrition (pacifhan.org). This exciting new alliance will facilitate the international sharing of information and resources to improve the quality of life of home artificial nutrition (HAN, the equivalent of our term “HPEN”) consumers.
PACIFHAN had its beginnings in September 2014, when representatives from five organizations (including the Oley Foundation) first met formally in Geneva, Switzerland, also in conjunction with an ESPEN meeting. Currently, the alliance includes the Oley Foundation (representing the U.S.) and groups from Australia/New Zealand (PNDU), the Czech Republic (Život bez streva), Italy (Un Filo per la Vita), Poland (Stowarzyszenie Apetyt na Zycie), Sweden (Svenska HPN-Föreningen), and the United Kingdom (PINNT). In the future, it is hoped that other HAN patient organizations will join PACIFHAN, and that members will share ideas on how PACIFHAN can help HPEN consumers and suggest areas that the alliance can investigate or develop with a patient focus. Please share any of your ideas with Joan at firstname.lastname@example.org or (518) 262-5079.
1. To be a trusted international reference on home artificial nutrition (HAN) from the patient’s perspective;
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