Expert opinion on facilitating intrafamily communication in rare diseases—Lessons from Fabry disease
Year: 2025
Type: article
Language: en
Topic: Genomics and Rare Diseases
Authors and affiliations:
raw_author_name: Dominique P. Germain
raw_affiliation_strings: 2nd Department of Internal Medicine, Cardiology and Angiology, General University Hospital and 1st Faculty of Medicine of Charles University, Prague, Czech Republic
Division of Medical Genetics, University of Versailles, Montigny, France
Referral Center for Fabry Disease and Lysosomal Diseases, MetabERN, APHP University Paris Saclay, Garches, France
raw_author_name: Fatma Al-Jasmi
raw_affiliation_strings: College of Medicine and Health Sciences, United Arab Emirates University, Al-Ain, United Arab Emirates
raw_author_name: Gheona Altarescu
raw_affiliation_strings: Hebrew University Hadassah School of Medicine, Shaare Zedek Medical Center, Jerusalem, Israel
raw_author_name: Olga Azevedo
raw_affiliation_strings: Reference Center of Lysosomal Storage Disorders, Hospital Senhora da Oliveira, Guimaraes, Portugal
raw_author_name: Fellype C. Barreto
raw_affiliation_strings: Service of Nephrology, Department of Internal Medicine, Federal University of Paraná, Curitiba, Brazil
raw_author_name: Alessandro P. Burlina
raw_affiliation_strings: Neurology Unit, St Bassiano Hospital, Bassano del Grappa, Italy
raw_author_name: Fatih Ezgü
raw_affiliation_strings: Gazi University Faculty of Medicine, Ankara, Türkiye
raw_author_name: Dawn A. Laney
raw_affiliation_strings: Emory University School of Medicine, Atlanta, GA, USA
raw_author_name: Ales Linhart
raw_affiliation_strings: 2nd Department of Internal Medicine, Cardiology and Angiology, General University Hospital and 1st Faculty of Medicine of Charles University, Prague, Czech Republic
raw_author_name: Manish Maski
raw_affiliation_strings: Sanofi, Cambridge, MA
raw_author_name: Sergey Moiseev
raw_affiliation_strings: Tareev Clinic of Internal Diseases, Sechenov First Moscow State Medical University, Moscow, Russia
raw_author_name: Dau-Ming Niu
raw_affiliation_strings: Institute of Clinical Medicine, National Yang-Ming University, Taipei, Taiwan; Department of Pediatrics, Taipei Veterans General Hospital, Taipei, Taiwan
raw_author_name: Kotaro Nochioka
raw_affiliation_strings: Department of Cardiovascular Medicine, Tohoku University Graduate School of Medicine, Sendai, Japan
raw_author_name: Yan Ouyang
raw_affiliation_strings: Department of Nephrology, Institute of Nephrology, Ruijin Hospital, The Medical School of Shanghai Jiao Tong University, Shanghai, China
raw_author_name: Huseyin Onay
raw_affiliation_strings: Multigen Genetic Diseases Diagnosis Center, Izmir, Türkiye
raw_author_name: Mary Pavlou
raw_affiliation_strings: Fabry International Network, Greece
raw_author_name: Nicholas Pachter
raw_affiliation_strings: The University of Western Australia, Perth, Australia; Genetic Health WA, King Edward Memorial Hospital, Perth, Australia
raw_author_name: Juan Politei
raw_affiliation_strings: Neurology Department, SPINE FUNDATION, Buenos Aires, Argentina
University Institute of Health Sciences, H.A. Barceló Foundation, Buenos Aires, Argentina
raw_author_name: Sunbul Rawda
raw_affiliation_strings: Genetic Unit, Pediatric Department, Qatif Central Hospital, Qatif, Saudi Arabia
raw_author_name: Richard P. Steeds
raw_affiliation_strings: University Hospitals Queen Elizabeth, Institute of Cardiovascular Sciences, University of Birmingham, Birmingham, United Kingdom
raw_author_name: Antonino Tuttolomondo
raw_affiliation_strings: Department of Health Promotion, Mother and Child Care, Internal Medicine and Medical Specialties (ProMISE) "G. D'Alessandro," University of Palermo, Palermo, Italy
Referrence Centre for Fabry Disease, AOUP "P. Giaccone" University Hospital, Palermo, Italy
raw_author_name: Wen-Chung Yu
raw_affiliation_strings: Taipei Veterans General Hospital and National Yang Ming Chiao Tung University, Taipei, Taiwan
raw_author_name: Michael L. West
raw_affiliation_strings: Division of Nephrology, Department of Medicine, Dalhousie University, Halifax, NS, Canada
raw_author_name: Kenneth I. Berger
raw_affiliation_strings: Sanofi, Cambridge, MA
raw_author_name: Irina Maksimova
raw_affiliation_strings: Sanofi, Cambridge, MA