Gaucher Patient Group Leaders Meet in Ireland

Barbara Diana | June 11, 2013

In March about 20 Gaucher patient group leaders gathered in Ireland at Genzyme’s Waterford manufacturing site for a one day advisory board meeting. The group represented a wide range of countries including Slovenia, Bulgaria, and the UK. Genzyme sponsored the meeting to gather valuable input and ideas for future Genzyme patient related initiatives.

The meeting covered a wide variety of topics, most notably the evolving role of patient groups in patient access. Patient group leaders discussed the current state of healthcare in their respective regions. Participants shared their local Gaucher awareness activities, which included the presentation from a 2012 PAL Award recipient from Macedonia. The day ended with a tour of Genzyme’s manufacturing facilities in Waterford.

One participant summarized this first meeting in the following words: “It was good to have old and new members involved in the Gaucher community at the meeting. It is extremely important that we support the new generation of Gaucher leaders.”

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