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European Journal of Human Genetics : EJHG|July 7, 2016
Challenges raised by cross-border testing of rare diseases in the European unionPia Pohjola, Victoria Hedley, Kate Bushby, et al.Journal of Community Genetics|May 5, 2021
Shaping national plans and strategies for rare diseases in Europe: past, present, and futureVictoria Hedley, Valentina Bottarelli, Ariane Weinman, et al.European Journal of Medical Genetics|January 15, 2017
How the EUCERD Joint Action supported initiatives on Rare DiseasesStephen Lynn, Victoria Hedley, Antonio Atalaia, et al.Orphanet Journal of Rare Diseases|February 26, 2016
The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference NetworksTeresinha Evangelista, Victoria Hedley, Antonio Atalaia, et al.Orphanet Journal of Rare Diseases|September 5, 2023
Together4RD position statement on collaboration between European reference networks and industryVictoria Hedley, Matt Bolz-Johnson, Ines Hernando, et al.The International Journal of Health Planning and Management|November 5, 2022
Understanding paediatric data standards challenges through academia-industry partnerships: A conect4children (c4c) qualitative studyAnando Sen, Avril Palmeri, Joanne Lee, et al.Drug Discovery Today|January 29, 2019
Implementation and relevance of FAIR data principles in biopharmaceutical R&DJohn Wise, Alexandra Grebe de Barron, Andrea Splendiani, et al.Advances in Experimental Medicine and Biology|December 8, 2017
Improved Diagnosis and Care for Rare Diseases through Implementation of Precision Public Health FrameworkGareth Baynam, Faye Bowman, Karla Lister, et al.Pageof 1