Affiliations

• ¹ Department of Dermatology, Maastricht University Medical Centre+, Maastricht, The Netherlands; GROW School for Oncology and Reproduction, Maastricht University, Maastricht, The Netherlands. Electronic address: fauve.van.veen@mumc.nl.
• ² The Tel Aviv Sourasky Medical Center (Ichilov), Gray Faculty of Medicine & Health Sciences, Tel Aviv University, Tel Aviv, Israel.
• ³ Pachyonychia Congenita Research & Patient Support Project (PC Project), Salt Lake City, Utah, USA.
• ⁴ Department of Dermatology, Royal London Hospital and Blizard Institute, Queen Mary University of London, London, United Kingdom.
• ⁵ Dutch Patient Association for Ichthyosis Networks, Assen, The Netherlands; Patient Advocacy Group, European Reference Network on Rare and Complex Skin Diseases (ERN Skin ePAG), Paris, France.
• ⁶ Patient Advocacy Group, European Reference Network on Rare and Complex Skin Diseases (ERN Skin ePAG), Paris, France; Ichthyosis Support Group, Wokingham, United Kingdom and Ireland; European Network for Ichthyosis, Kürten-Hufe, Germany.
• ⁷ Patient Advocacy Group, European Reference Network on Rare and Complex Skin Diseases (ERN Skin ePAG), Paris, France; Global Albinism Alliance, Paris, France; Genespoir, French Association of Albinism, Rennes, France.
• ⁸ Department of Dermatology at the Nelson R. Mandela School of Medicine, the University of KwaZulu Natal (UKZN), Durban, South Africa.
• ⁹ Department of Biomedical Innovation CIEMAT-CIBERER, Madrid, Spain; Centro de Investigaciones Biomédicas en Red de Enfermedades Rares (CIBERER), Valencia, Spain; Department of Bioengineering, University Carlos III Madrid (UC3M), Madrid, Spain; Instituto de Investigacion Sanitaria, Fundación Jimenez Díaz (IIS-FJD), Madrid, Spain.
• ¹⁰ Butterfly Children Charity (NGO DEBRA Spain), Marbella, Spain.
• ¹¹ Department of Dermatology, Newcastle University, Newcastle, United Kingdom.
• ¹² Department of Dermatology, Maastricht University Medical Centre+, Maastricht, The Netherlands; GROW School for Oncology and Reproduction, Maastricht University, Maastricht, The Netherlands.