Addressing unmet needs in pregnancy and family planning of people living with rare and low-prevalence diseases: results of the "ERN transversal working group on pregnancy and family planning" survey.

Fulvio, Giovanni; Marinello, Diana; Zucchi, Dina; Aguilera, Silvia; Benachi, Alexandra; Biller, Ruth; Blanco, Ignacio; Boiteux, Marie-Claude; Borgards, Petra; Luisa Brandi, Maria; Costafreda, Ester; E Fonseca, João; Fredi, Micaela; Guimarães, Vera; Iotova, Violeta; Lecointe-Artzner, Estelle; Rita Lopes, Ana; Louisse, Simone; Nalli, Cecilia; Olesinska, Marzena; Onali, Michela; Papenthin, Wiebke; Power, Beverley; Röhl, Claas; Rousset-Jablonski, Christine; Sturz, Dominique; Tincani, Angela; Jm der van Vleuten, Carine; Vieira, Ana; Dan, Dorica; De Backer, Julie; de Die Smulders, Christina; Dufke, Andreas; Frank, Charissa; Limongelli, Giuseppe; Lorenz, Birgit; Kilpiäinen, Elisa; Jesús Pascau, María; Raidt, Johanna; Ray-Coquard, Isabelle; Rimmer, Rachel; Schneider, Holm; J der Van Pal, Helena; Yap, Tet; Talarico, Rosaria; Tani, Chiara; Mosca, Marta

doi:10.1186/s12978-025-02136-5

Public

Addressing unmet needs in pregnancy and family planning of people living with rare and low-prevalence diseases: results of the "ERN transversal working group on pregnancy and family planning" survey.

Shared by NobleBlocks on Nov 25, 2025 • 12:00 AM UTC

Authors:

Giovanni Fulvio

Diana Marinello

Dina Zucchi

Abstract

BACKGROUND: Pregnancy and family planning for individuals living with rare and low prevalence diseases present unique medical, psychological, and logistical challenges. The European Reference Networks (ERNs) were established to address healthcare disparities and enhance patient care for rare disease...

Subject

Patient-centered care european reference networks (ERN)

Pregnancy

Psychological support

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