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June 29, 2026Orphanet Journal of Rare DiseasesOpen Access

Management of pregnancy in women with rare multisystemic vascular diseases: a qualitative survey analysis

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Authors

GSGloria Somalo-BarrancoABAlexandra BenachiLBL. Boon

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Overview

Qualitative survey analyzes challenges and practices in pregnancy management for women with rare vascular diseases, indicating a need for improved care structures.

Key Points

  • The aim is to describe current practices and perceptions regarding the management of pregnancy in women with rare vascular diseases.
  • A 13-item survey developed by the European Reference Networks was distributed to healthcare providers and patient representatives.
  • Qualitative data from open-ended responses were analyzed using an inductive thematic approach.
  • 36 responses collected from 145 VASCERN members, yielding a 25% response rate.
  • Five themes identified included the need for coordinated multidisciplinary approaches and variability in genetic counseling practices.
  • Common concerns lead to calls for better education and structured care pathways.

Cite This Study

Somalo-Barranco et al. (2026) studied this question.

synapsesocial.com/papers/6a420b08f91bb43ea91922aahttps://doi.org/10.1186/s13023-026-04472-6
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Addressing 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” survey2025
  2. 2Exploring Reproductive Experiences With Women Enrolled in the International Vasculitis Pregnancy Registry2024 · 1 citations
  3. 3Neurovascular Disorders in Pregnancy: Prevalence, Clinical Assessment and Management—A Review of the Literature2026
  4. 4Challenges in the care of rare vascular liver diseases: Insights from patients, health care providers, and patient organizations2026
  5. 5Cardiovascular risk management after hypertensive disorders and diabetes during pregnancy, in a multi-ethnic population: A qualitative study among women and healthcare providers2025 · 2 citations