The Importance of Shared Patient Voices in Advancing Science for Genodermatoses on a Global Scale

Fauve C.A.P. van Veen; Eli Sprecher; Janice Schwartz; Tom Baker; Edel A. O'Toole; Karin Veldman; Mandy Aldwin-Easton; Antoine Gliksohn; Ncoza Dlova; Fernando Larcher; Núria Tarrats; Neil Rajan; Antoni H. Gostynski

doi:10.1016/j.jid.2025.05.027

The Importance of Shared Patient Voices in Advancing Science for Genodermatoses on a Global Scale

Fauve C.A.P. van Veen^*
, Eli Sprecher
, Janice Schwartz
, Tom Baker
, Edel A. O'Toole
, Karin Veldman
, Mandy Aldwin-Easton
, Antoine Gliksohn
, Ncoza Dlova
, Fernando Larcher
, Núria Tarrats
, Neil Rajan
, Antoni H. Gostynski

^*Corresponding author for this work

Research output: Contribution to journal › Comment/Letter to the editor › Academic › peer-review

Original language	English
Pages (from-to)	2127-2130
Number of pages	4
Journal	Journal of Investigative Dermatology
Volume	145
Issue number	9
Early online date	1 Jul 2025
DOIs	https://doi.org/10.1016/j.jid.2025.05.027
Publication status	Published - Sept 2025

Keywords

Albinism
Epidermolysis bullosa
Ichthyosis
Pachyonychia congenita
Patient voice
Rare diseases
Research participation
Skin

Access to Document

10.1016/j.jid.2025.05.027

Cite this

van Veen, F. C. A. P., Sprecher, E., Schwartz, J., Baker, T., O'Toole, E. A., Veldman, K., Aldwin-Easton, M., Gliksohn, A., Dlova, N., Larcher, F., Tarrats, N., Rajan, N., & Gostynski, A. H. (2025). The Importance of Shared Patient Voices in Advancing Science for Genodermatoses on a Global Scale. Journal of Investigative Dermatology, 145(9), 2127-2130. https://doi.org/10.1016/j.jid.2025.05.027

@article{21a84c43f1e04d8b8d7c5ae6cb5c8151,

title = "The Importance of Shared Patient Voices in Advancing Science for Genodermatoses on a Global Scale",

keywords = "Albinism, Epidermolysis bullosa, Ichthyosis, Pachyonychia congenita, Patient voice, Rare diseases, Research participation, Skin",

author = "\{van Veen\}, \{Fauve C.A.P.\} and Eli Sprecher and Janice Schwartz and Tom Baker and O'Toole, \{Edel A.\} and Karin Veldman and Mandy Aldwin-Easton and Antoine Gliksohn and Ncoza Dlova and Fernando Larcher and N{\'u}ria Tarrats and Neil Rajan and Gostynski, \{Antoni H.\}",

year = "2025",

month = sep,

doi = "10.1016/j.jid.2025.05.027",

language = "English",

volume = "145",

pages = "2127--2130",

journal = "Journal of Investigative Dermatology",

issn = "0022-202X",

publisher = "Elsevier B.V.",

number = "9",

}

van Veen, FCAP, Sprecher, E, Schwartz, J, Baker, T, O'Toole, EA, Veldman, K, Aldwin-Easton, M, Gliksohn, A, Dlova, N, Larcher, F, Tarrats, N, Rajan, N & Gostynski, AH 2025, 'The Importance of Shared Patient Voices in Advancing Science for Genodermatoses on a Global Scale', Journal of Investigative Dermatology, vol. 145, no. 9, pp. 2127-2130. https://doi.org/10.1016/j.jid.2025.05.027

TY - JOUR

T1 - The Importance of Shared Patient Voices in Advancing Science for Genodermatoses on a Global Scale

AU - van Veen, Fauve C.A.P.

AU - Sprecher, Eli

AU - Schwartz, Janice

AU - Baker, Tom

AU - O'Toole, Edel A.

AU - Veldman, Karin

AU - Aldwin-Easton, Mandy

AU - Gliksohn, Antoine

AU - Dlova, Ncoza

AU - Larcher, Fernando

AU - Tarrats, Núria

AU - Rajan, Neil

AU - Gostynski, Antoni H.

PY - 2025/9

Y1 - 2025/9

KW - Albinism

KW - Epidermolysis bullosa

KW - Ichthyosis

KW - Pachyonychia congenita

KW - Patient voice

KW - Rare diseases

KW - Research participation

KW - Skin

U2 - 10.1016/j.jid.2025.05.027

DO - 10.1016/j.jid.2025.05.027

M3 - Comment/Letter to the editor

SN - 0022-202X

VL - 145

SP - 2127

EP - 2130

JO - Journal of Investigative Dermatology

JF - Journal of Investigative Dermatology

IS - 9

ER -