Maria Cruz Sanchez-Gómez (University of Salamanca), Mª Victoria Martín-Cilleros (Universidad de Salamanca), Galita Decheva (Institute for Rare Diseases), Iuliana Dobrescu (Victor Babes” National Institute of Pathology), Hanna Ebelin (University of Oulu), Magdalena Efrim (Victor Babes” National Institute of Pathology), Mika Gissler (University of Oulu), Andrea K. Guðmundsdóttir (State Diagnostic and Counselling Centre, Kópavogur, Iceland), Agustín Huete-garcia (Universidad de Salamanca), Georgi Iskrov (Institute for Rare Diseases), Sigrídur Jónsdóttir (State Diagnostic and Counselling Centre, Kópavogur, Iceland), Rafal Kawa (University of Warsaw), Sanne Lemcke (Aarhus University), Filippo Muratori (IRCCS Stella Maris Foundation), Antonio Narzisi (IRCCS Stella Maris Foundation), Angel Pinto Bruno (Universidad de Salamanca), Bernadette Rogé (University of Toulouse 2), Evald Saemundsen (State Diagnostic and Counselling Centre, Kópavogur, Iceland), Diana Schendel (Aarhus University), Anthony Staines (Dublin City University, School of Nursing and Human Sciences), Rumen Stefanov (Institute for Rare Diseases), Mary Rose Sweeny (Dublin City University, School of Nursing and Human Sciences), Astrid Vicente (National Health Institute Doutor Ricardo Jorge), Christine Kloster Warberg (Aarhus University), Anneli Yliherva (University of Oulu), PATRICIA GARCÍA-PRIMO (Institute of Rare Diseases Research, ISCIII), Manuel Posada (Institute of Rare Diseases Research, ISCIII), Ricardo Canal-Bedia (University of Salamanca)