ERN ReCONNET APS Disease Group 2025 update
The APS Disease Group continues to strengthen its activities and collaborative efforts across ERN ReCONNET, and we are pleased to share the latest developments as we move through
2025.
One of the most exciting updates is the arrival of Jamy Scheerhoorn-Pullen, who joins us as the new ePAG representative for Antiphospholipid Syndrome. Jamy’s perspective and
commitment to patient advocacy will bring valuable insight to several ongoing initiatives and design of future projects.
A new qualitative study published in Lupus Science & Medicine (PMID: 41160414) offers an updated picture of the persistent gaps in APS care across Europe, revealing how delayed diagnosis, limited multidisciplinary pathways, and fragmented rare-disease policies continue to hinder patients’ journeys. Stakeholders from multiple disciplines also underscored the ongoing challenges of anticoagulation management and the striking lack of APS representation in medical education, issues that together point to the need for coordinated, Europe-wide strategies to truly improve care.
Educational activities also continue to flourish. ERN ReCONNET recently hosted, with the support of ERKNet, a well-received webinar dedicated to Microvascular APS, reflecting the increasing clinical focus on this challenging and often under-recognized domain. Building on this momentum, preparations are underway for two major webinars scheduled for 2026: one devoted to the question “When to think about APS?”, addressing hidden or atypical presentations, and another on the management of reproductive health and pregnancy in APS, designed to answer common patient-driven questions and to provide practical guidance for clinicians.
Several projects continue to make significant progress. The Red Flags in APS initiative is advancing toward the definition of a cross-disease framework aimed at improving early recognition patterns, while the APS 100 Q&A project is moving steadily toward completion, with ongoing contributions from clinicians, researchers, and patient associations. In parallel, a survey assessing clinical attitudes toward INR point-of-care monitoring has been circulated, seeking to capture current practices and identify opportunities to enhance anticoagulation management for patients on long-term therapy. The APS disease group has also contributed to the TogethERN ReCONNET Registry by identifying and integrating disease-specific variables.
Looking ahead, we are pleased to announce a call for interest in the ASPETO Survey, a new project focusing on the management of APS in pregnancy and therapy-related outcomes. The initiative, coordinated by Aleksandra Antovic, Laura Andreoli, and Jelena Colic, aims to gather comprehensive real-world data and to address important unmet needs in reproductive health for individuals living with APS.
Whether through research, education, or patient engagement, our shared goal remains the improvement of care, knowledge, and resources for the APS community.
We thank all collaborating centres, investigators, patients, and partners for their continuous involvement and look forward to building further momentum in the months ahead.
