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.

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 diseases across Europe. The ERN Transversal Working Group on Pregnancy and Family Planning was created to identify common unmet needs and to develop targeted actions to improve healthcare delivery. As part of this initiative, a survey was conducted to gather insights from patients, caregivers, and family members about their experiences and challenges related to pregnancy and family planning.

Methods

The survey was co-designed by healthcare professionals and patient representatives from 20

SUBMITTER: Fulvio G 

PROVIDER: S-EPMC12648893 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature