Milan Macek
Motol University Hospital and Charles University Prague
Maria Montefusco
Rare Disease Sweden
Violeta Stroyanova – Beninska
Committee on Orphan Medicinal Products, European Medicines Agency
Diego Ardigo
Chiesi Farmaceutici
Dimitrios Athanasiou
World Duchenne Organisation
Matt Bolz-Johnson
EURORDIS
Valentina Bottarelli
EURORDIS
Virginie Bros-Facer
EURORDIS
Sofia Douzgou
ESHG
Holm Graeßner
Solve-RD and ERN-RND
Robert Hejdenberg
Agrenska
Virginie Hivert
EURORDIS
Jessica Imbert
MedTech Europe
Julian Isla
Dravet Syndrome European Federation
Justina Janusevicene
Lithuanian University of Health Sciences
Daria Julkowska
European Joint Programme on Rare Diseases
Anna Kole
EURORDIS
Kristina Larsson
European Medicines Agency
Yann Le Cam
EURORDIS
Brian O’Connor
ECH Alliance
Ana Palma
EUCOPE
Anne Pariser
National Institutes of Health
Christine Patch
Genomics England
Alberto Pereira
ENDO ERN
Vinciane Pirard
Ana Rath
Orphanet
Andrea Ricci
ISINNOVA
Birute Tumiene
Institute of Biomedical Sciences, Vilnius University
Simone Boselli
EURORDIS
Marta Campabadal
EURORDIS
Maria Cavaller
EURORDIS
Denis Costello
CML Advocates Network
Gulcin Gumus
EURORDIS
Ines Hernando
EURORDIS
Clara Hervas
EURORDIS
Carita Åkerblom
Finnish Network for Rare Diseases
Simona Bellagambi
Rare Diseases Italy (UNIAMO)
Danas Ceilitka
Association for Children Rare Diseases
Carolina Cobos
FEDER
Helga Gruden
EINSTÖK BÖRN
Jurrat Hasan
Genetic Alliance UK
Lene Jensen
Rare Diseases Denmark (Sjaeldne Diagnoser)
Mirjam Mann
ACHSE
Martina Michalova
Rare diseases Czech Republic
Cor Oosterwijk
VSOP
Jean Philippe Placon
Alliance Maladies Rares
Ingeborg Vea
Norwegian Rare Disease National Alliances (FFO)
Miroslaw Zielinski
ORPHAN
Baiba Ziemele
Latvian Alliance for Rare Diseases
Organised by:
Co-organised by:
