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A paper written by Anne-Grethe Lauridsen, Jo Higgs and Vesna Aleksovska on behalf of the EGA has been published in the Orphanet Journal of Rare Diseases’ supplement of the 8th European Conference on Rare Diseases & Orphan Products (ECRD 2016).
The full content of the supplement can be found at https://ojrd.biomedcentral.com/articles/supplements/volume-11-supplement-1 .
Anne-Grethe presented this exciting project at the 8th ECRD meeting in Edinburgh in May 2016.