September 14th, 2026
We are pleased to announce the publication of two JARDIN articles from Work Package 6. One in the European Journal of Medical Genetics (EJMG) special issue, dedicated to the integration of European Reference Networks (ERNs) into national healthcare systems, and a second article in the Lancet, on crisis readiness for rare disease populations:
WP6 articles:
Developing Consensus on Rare Disease Care Pathways and ERN Integration Across Europe: Insights from Stakeholder Workshops and a Delphi Study
Juozapavičiūtė-Dvinelė A, Tsang-A-Sjoe MWP, Auzenbaha M, Ažukaitis K; JA JARDIN WP6 collaborators; Tumienė B. European Journal of Medical Genetics 83 (2026) 105096.
Read the full article: https://doi.org/10.1016/j.ejmg.2026.105096
Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks
Hélène Dollfus, Alexis Arzimanoglou, Teresinha Evangelista, Holm Graessner, Marta Mosca, Luca Sangiorgi, Jean-Yves Blay, Christine Bodemer, Pierre Fenaux, Francisco Hernández, Guillaume Jondeau, Marjolijn J.L. Ligtenberg, Ansgar W. Lohse, Irene M.J. Mathijssen, Peter Mulders, Alberto M. Pereira, Franz Schaefer, Joost F. Swart, Alain Verloes, Thomas O.F. Wagner, René M.H. Wijnen, Arthur A.M. Wilde, María del Mar Mañú Pereira, Ruth Ladenstein, Maurizio Scarpa. The Lancet Regional Health – Europe, 69 (2026) 101801
Read the full article: https://doi.org/10.1016/j.lanepe.2026.101801
More information about the special issue is available here, including the current open call for papers (deadline for manuscript submission: 1 December 2026): JARDIN Special Issue.