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News & Press: Oley News

New International Alliance of HPEN Consumer Groups

Tuesday, December 29, 2015   (0 Comments)
Posted by: Cathy Harrington
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 Representatives of PACIFHAN at ESPEN meeting in Lisbon.

 

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 bishopj@mail.amc.edu or (518) 262-5079.

 

PACIFHAN’s Goals:

1. To be a trusted international reference on home artificial nutrition (HAN) from the patient’s perspective;
2. To encourage the exchange of internationally peer reviewed published medical-scientific information related to HAN;
3. To assist HAN patients who wish to travel/stay abroad to seek guidance through the member association in the destination country affiliated with the international organization;
4. To organize an annual general meeting that will be attended by a representative of each member association;
5. To increase awareness of HAN;
6. To improve the quality of life of HAN patients.

 


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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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