ERN ReCONNET SSc Disease Group 2025 update

The year 2025 has been a period of significant productivity for the Systemic Sclerosis (SSc) Disease Group, marked by the completion of key projects and the launch of initiatives vital to clinical practice and research.

The group actively contributed to the ERN ReCONNET online course through several specialized lessons: Calcinosis by Corrado Campochiaro and Aslıhan Avanoğlu; Oral Hygiene in SSc by Sophie Jung; the Patient perspective on soft tissue damage by Lorraine McKenzie and on calcinosis by Greta Causa; Soft tissue damage by Michael Hughes; and Using nutrition to help manage GI symptoms in SSc by Elizabeth Volkmann. Additionally, the group played a very important role by providing an active contribution to the rigorous testing and successful official launch of the CPMS 2.0, a tool that allows for more streamlined, secure, and collaborative multidisciplinary consultation for rare and complex diseases across Europe.

Two major clinical webinars were successfully delivered: “Treatment of systemic sclerosis-associated ILD: where do we stand in 2025?” held on February 19 (Speaker: David Launay; Moderators: Madelon Vonk, Marco Matucci Cerinic) and “The transition from benign to secondary Raynaud’s phenomenon” on July 02 (Speakers: Maurizio Cutolo, Vanessa Smith; Moderator: Gerd Burmester). Furthermore, a scientific paper was published by Talarico R, et al., focusing on the ERN ReCONNET organizational reference model for systemic sclerosis patient care pathways.

Currently, an ongoing survey available in nine languages is mapping the self-management of digital lesions by patients across EU countries to inform future recommendations, a project coordinated by Ilaria Galetti, Corrado Campochiaro, and Vanessa Smith.

Looking ahead to 2026, the main initiative will be a joint project between ERN ReCONNET and WSF, coordinated by David Launay and Marco Matucci Cerinic, focused on identifying “Red Flags” for patients with rapidly progressive or severe SSc.