Pregnancy-related issues in rare and low-prevalence diseases: results of ERN transversal working group on pregnancy and family planning survey

Authors: Dina Zucchi, Diana Marinello, Chiara Tani, Giovanni Fulvio, Silvia Aguilera, Alexandra Benachi, Ruth Biller, Ignacio Blanco, Petra Borgards, Marie-Claude Boiteux, Maria Luisa Brandi, Ester Costafreda, Joao E. Fonseca, Micaela Fredi, Violeta Iotova, Simone Louisse, Cecilia Nalli, Michela Onali, Beverley Power, Christine Rousset-Jablonski, Dominique Sturz, Angela Tincani, Ana Vieira, Susana Capela, Dorica Dan, Julie De Backer, Christine de Die-Smulders, Andreas Dufke, Estelle Lecointe Artzner, Giuseppe Limongelli, Birgit Lorenz, Wiebke Papenthin, María Jesús Pascau, Johanna Raidt, Isabelle Ray-Coquard, Rachel Rimmer, Claas Röhl, Holm Schneider, Tet Yap, Rosaria Talarico, Marta Mosca

Source: Orphanet Journal of Rare Diseases, Vol 20, Iss 1, Pp 1-7 (2025)

Subject Terms: Rare diseases, Pregnancy-related issues, Unmet needs, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/e8178970fd424c8ea3ab1a68dd33e20a

Social Resources for Transplanted Children and Families in European Union Hospitals of ERN TransplantChild

Authors: María Jesús Pascau, Laura Pruneda, Ilaria de Barbieri, Matilde Correia, Belén López, Erika Guijarro, Gonzalo Sofío, Esteban Frauca Remacha, Paloma Jara Vega, on behalf of ERN TransplantChild Healthcare Working Group

Source: Children, Vol 8, Iss 9, p 723 (2021)

Subject Terms: paediatric transplant, social support, children with special health care needs, long-term care, rare diseases, chronic health conditions, Pediatrics, RJ1-570

File Description: electronic resource

Relation: https://www.mdpi.com/2227-9067/8/9/723; https://doaj.org/toc/2227-9067

Access URL: https://doaj.org/article/1ced255ec99247c191df89f782174f4a

La planificación anticipada de las decisiones al final de la vida: El rol de los profesionales sanitarios en general y de Enfermería en particular

Authors: Apolo García Palomares, Eva Abad Corpa, María Jesús Pascau González-Garzón, Ruth Sánchez Pérez

Source: NURE Investigación, Vol 3, Iss 20 (2006)

Subject Terms: Medicine, Nursing, RT1-120

File Description: electronic resource

Relation: http://www.nureinvestigacion.es/OJS/index.php/nure/article/view/269; https://doaj.org/toc/1697-218X

Access URL: https://doaj.org/article/db07edfdd1d947639e682fb5833af8dc

Discussing advance preferences for end-of-life: The role of nurses and other health proffessionals

Authors: Apolo García Palomares, Eva Abad Corpa, María Jesús Pascau González-Garzón, Ruth Sánchez Pérez

Source: NURE Investigación, Vol 3, Iss 20 (2006)

Subject Terms: Autonomy, living wills, advance directives, advance care planning, advance decision care planning’s, nursing, Medicine, Nursing, RT1-120

File Description: electronic resource

Relation: http://www.fuden.es/originales_detalle.cfm?ID_ORIGINAL=96&FilaInicio=7; https://doaj.org/toc/1697-218X

Access URL: https://doaj.org/article/cfa3c7484e464760b5391c651cba6375