A couple of take-home messages.
Firstly, we now knew that the trials were progressing fairly well. Ans van der Ploeg's comment that they they would be celebrating 2 birthdays in the next week was a broad hint that things were going quite well but also that we should not expect any preliminary accounts of results. An optimum balance between compassion and professionalism.
Secondly, the patient representatives went away with specific goals to broaden and strengthen the international patient community. The IPA itself was to prove a durable framework for future work, particularly as a focus for dealing with industry. Special mention here must go to Helmut Erny who did the hard work of writing up a proper legal constitution.
Lastly, some archive photos courtesy of the VSN:
(L to R: John Hopwood, Kevin O'Donnell, Ysbrand Poortman)
(L to R Marylyn House, Gezinus Wolters, Kevin O'Donnell
Arnold Reuser and John Hopwood
John Hopwood is a good guy and a stalwart supporter of the Aussie patient group. His contributions to Pompe research are many and varied, from the first cell line producing enzyme to new approaches to neonatal diagnosis. However, I have to confess that I felt his talk at this conference - which was excellent - was somewhat over-shadowed by his enthralling account of how he resuscitated his son's goldfish.
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