Expert opinion on facilitating intrafamily communication in rare diseases—Lessons from Fabry disease

Dominique P. Germain; Fatma Al-Jasmi; Gheona Altarescu; Olga Azevedo; Fellype C. Barreto; Alessandro P. Burlina; Fatih Ezgü; Dawn A. Laney; Ales Linhart; Manish Maski; Sergey Moiseev; Dau Ming Niu; Kotaro Nochioka; Yan Ouyang; Huseyin Onay; Mary Pavlou; Nicholas Pachter; Juan Politei; Sunbul Rawda; Richard P. Steeds; Antonino Tuttolomondo; Wen Chung Yu; Michael L. West; Kenneth I. Berger; Irina Maksimova

doi:10.1016/j.gimo.2025.103481

Expert opinion on facilitating intrafamily communication in rare diseases—Lessons from Fabry disease

Dominique P. Germain
, Fatma Al-Jasmi
, Gheona Altarescu
, Olga Azevedo
, Fellype C. Barreto
, Alessandro P. Burlina
, Fatih Ezgü
, Dawn A. Laney
, Ales Linhart
, Manish Maski
, Sergey Moiseev
, Dau Ming Niu
, Kotaro Nochioka
, Yan Ouyang
, Huseyin Onay
, Mary Pavlou
, Nicholas Pachter
, Juan Politei
, Sunbul Rawda
, Richard P. Steeds

Antonino Tuttolomondo, Wen Chung Yu, Michael L. West, Kenneth I. Berger, Irina Maksimova

Université Paris-Saclay
Université Paris-Saclay
Charles University
Hebrew University-Hadassah Medical School
Hospital Senhora da Oliveira
Universidade Federal do Paraná
St. Bassiano Hospital
Gazi University
Emory University
Sanofi Pasteur Biologics, LLC
Sechenov First Moscow State Medical University
National Yang Ming Chiao Tung University
Tohoku University
Shanghai Jiao Tong University
Multigen Genetic Diseases Diagnosis Center
Fabry International Network
University of Western Australia
Spine Fundation
Instituto Universitario de Ciencias de la Salud. Fundación H. A. Barceló
Qatif Central Hospital
University of Birmingham
Ambulatorio fisiopatologia digestiva AOU Paolo Giaccone
University of Palermo
Dalhousie University

Research output: Contribution to journal › Editorial

Original language	English
Article number	103481
Journal	Genetics in Medicine Open
Volume	4
DOIs	https://doi.org/10.1016/j.gimo.2025.103481
State	Published - Jan 2026

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10.1016/j.gimo.2025.103481

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Germain, D. P., Al-Jasmi, F., Altarescu, G., Azevedo, O., Barreto, F. C., Burlina, A. P., Ezgü, F., Laney, D. A., Linhart, A., Maski, M., Moiseev, S., Niu, D. M., Nochioka, K., Ouyang, Y., Onay, H., Pavlou, M., Pachter, N., Politei, J., Rawda, S., ... Maksimova, I. (2026). Expert opinion on facilitating intrafamily communication in rare diseases—Lessons from Fabry disease. Genetics in Medicine Open, 4, Article 103481. https://doi.org/10.1016/j.gimo.2025.103481

@article{81d1920e20da4d2495c744b8faf19817,

title = "Expert opinion on facilitating intrafamily communication in rare diseases—Lessons from Fabry disease",

author = "Germain, \{Dominique P.\} and Fatma Al-Jasmi and Gheona Altarescu and Olga Azevedo and Barreto, \{Fellype C.\} and Burlina, \{Alessandro P.\} and Fatih Ezg{\"u} and Laney, \{Dawn A.\} and Ales Linhart and Manish Maski and Sergey Moiseev and Niu, \{Dau Ming\} and Kotaro Nochioka and Yan Ouyang and Huseyin Onay and Mary Pavlou and Nicholas Pachter and Juan Politei and Sunbul Rawda and Steeds, \{Richard P.\} and Antonino Tuttolomondo and Yu, \{Wen Chung\} and West, \{Michael L.\} and Berger, \{Kenneth I.\} and Irina Maksimova",

year = "2026",

month = jan,

doi = "10.1016/j.gimo.2025.103481",

language = "English",

volume = "4",

journal = "Genetics in Medicine Open",

issn = "2949-7744",

publisher = "Elsevier BV",

}

Germain, DP, Al-Jasmi, F, Altarescu, G, Azevedo, O, Barreto, FC, Burlina, AP, Ezgü, F, Laney, DA, Linhart, A, Maski, M, Moiseev, S, Niu, DM, Nochioka, K, Ouyang, Y, Onay, H, Pavlou, M, Pachter, N, Politei, J, Rawda, S, Steeds, RP, Tuttolomondo, A, Yu, WC, West, ML, Berger, KI & Maksimova, I 2026, 'Expert opinion on facilitating intrafamily communication in rare diseases—Lessons from Fabry disease', Genetics in Medicine Open, vol. 4, 103481. https://doi.org/10.1016/j.gimo.2025.103481

TY - JOUR

T1 - Expert opinion on facilitating intrafamily communication in rare diseases—Lessons from Fabry disease

AU - Germain, Dominique P.

AU - Al-Jasmi, Fatma

AU - Altarescu, Gheona

AU - Azevedo, Olga

AU - Barreto, Fellype C.

AU - Burlina, Alessandro P.

AU - Ezgü, Fatih

AU - Laney, Dawn A.

AU - Linhart, Ales

AU - Maski, Manish

AU - Moiseev, Sergey

AU - Niu, Dau Ming

AU - Nochioka, Kotaro

AU - Ouyang, Yan

AU - Onay, Huseyin

AU - Pavlou, Mary

AU - Pachter, Nicholas

AU - Politei, Juan

AU - Rawda, Sunbul

AU - Steeds, Richard P.

AU - Tuttolomondo, Antonino

AU - Yu, Wen Chung

AU - West, Michael L.

AU - Berger, Kenneth I.

AU - Maksimova, Irina

PY - 2026/1

Y1 - 2026/1

UR - https://www.scopus.com/pages/publications/105027170074

U2 - 10.1016/j.gimo.2025.103481

DO - 10.1016/j.gimo.2025.103481

M3 - Editorial

AN - SCOPUS:105027170074

SN - 2949-7744

VL - 4

JO - Genetics in Medicine Open

JF - Genetics in Medicine Open

M1 - 103481

ER -

Expert opinion on facilitating intrafamily communication in rare diseases—Lessons from Fabry disease

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