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

^*Corresponding author for this work

Institute for Medical Research Israel-Canada (IMRIC)

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

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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 = "אנגלית",

volume = "4",

journal = "Genetics in Medicine Open",

issn = "2949-7744",

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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

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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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