ERN ReCONNET New Disease Coordinators
The ERN ReCONNET has elected its new Disease Coordinators that will lead the activities and actions of the Ehlers-Danlos syndromes (EDS) and the Sjögren’s Syndrome* (SS) disease groups.
The elections saw a huge participation among the Network members and as ERN ReCONNET we congratulate with Dr. Marco Castori from the Fondazione IRCCS-Casa Sollievo della Sofferenza, San Giovanni Rotondo – Foggia (Italy) and Prof. Gaetane Nocturne from the APHP – Hopital Bicetre – Paris Saclay University, Paris (France).
Dr. Castori succeeds to Prof. Fransiska Malfait (Ghent University Hospital, Belgium) on coordinating the EDS Disease Group together with Prof. Alberto Sulli from the IRCCS – Ospedale San Martino, Genoa (Italy), while Prof. Nocturne will now coordinate the SS Disease Group with Prof. Chiara Baldini from the AUOP, Pisa (Italy), succeeding to Prof. Xavier Mariette (APHP, Hopital Bicêtre – Paris Saclay University, France).
Dr. Marco Castori is an Italian physician and clinical researcher. Dr. Castori is the Director of Medical Genetics and Coordinator of the Rare Disease Program at Fondazione IRCCS – Casa Sollievo della Sofferenza. In this role, he leads a multiprofessional team focused on the diagnosis and care of people affected by or carrier of rare genetic diseases. Since 2010, Dr. Castori has a special interest on: Joint Hypermobility, Hereditary Connective Tissue Disorders, and EDS. He coined and introduced the term ‘Hypermobility Spectrum Disorders’ (HSD) into the medical literature to define phenotypes of symptomatic (generalized) joint hypermobility in people that are not affected by known monogenic disorders and do not meet the criteria of hypermobile EDS. In this setting, Dr. Castori is actively involved in disseminating knowledge on the best use of the label ‘hypermobility spectrum disorder’ to serve patients’ needs.
Prof. Gaetane Nocturne is an immuno-rheumatologist specializing in rare systemic autoimmune diseases with a particular focus on SS; Prof. Nocturne works in the research lab IMVA – Immunology of Viral Infections and Autoimmune Diseases, 1184/IMVA French Joint Research Unit INSERM/Université Paris Saclay/CEA. At the French and European Reference Center for Sjögren disease at Bicêtre Hospital – Paris Saclay University, she seamlessly integrates patient care, research, and education. Prof. Nocturne’s dedication to patient care extends to the development of innovative patient education programs. She has led initiatives that empower patients with SS by enhancing their understanding of the disease and its management, fostering self-care, and improving their quality of life. These programs are a vital component of her comprehensive treatment strategy, emphasizing patient education as a fundamental aspect of effective disease management. In addition, Prof. Nocturne is heavily involved in translational research dedicated to the immunopathology of SS. The scientific questions she tackles in the laboratory stem from clinical observations at the bedside and her research in turn aims to improve patient care. She strongly believes that collaboration between patients, clinicians, and researchers is the greatest strength in producing high quality research that can significantly improve patient care.
Regarding their commitment to the ERN ReCONNET future actions and initiatives, Dr. Castori stated that he will focus his future actions in collaboration with Prof. Sulli and the ePAGs, Eva Collado and Charissa Frank by updating the mainstream theme of the Disease Group that will be focused on the medical manifestations of joint hypermobility also including its most common syndromic presentations, that are the EDS. On this perspective, the Disease Group’s activities will be in line with the previously established tasks and will be further extended to reach a European consensus on the HSD, a clinical entity at the bridge between the EDS and normal human variability.
Prof. Nocturne is strongly motivated on advancing access to knowledge for patients and healthcare professionals, particularly through organization of modules focused to SS within the ERN ReCONNET training course thanks to a solid collaboration with Prof. Baldini and the ePGAs Anna Vieria and Coralie Bouillot.
“ERN ReCONNET represents a unique opportunity for the scientific and patients’ communities sharing interests in ‘joint hypermobility and related clinical entities’ to reach a ‘next generation approach’ to the issue in the light of the most recent advances to improve communication among specialists and quality of life for these affected persons”. Dr. Castori
“ERN ReCONNET is a terrific initiative that provides us with an exceptional opportunity to improve the management of SS by integrating patient perspectives in every aspect of the research and by uniting Sjögren’s research across Europe. I am thrilled to collaborate with all of you to achieve these goals!”. Prof. Nocturne
ERN ReCONNET is extremely proud and honored to have such high-profile professionals on board, it is amazing seeing their commitment to further reinforce and implement our Network activities and levels of innovation. Congrats Dr. Castori and Prof. Nocturne, surely your contribution will further increase the ERN ReCONNET engagement and impact on the healthcare ecosystem.
* We acknowledge that Sjögren’s syndrome by some groups is referred to as Sjögren’s disease or simply Sjögren’s, for purpose of uniformity for the ERN Reconnect nomenclature we will use Sjogren’s syndrome.
Here are some videos messages recorded by Dr. Castori and Prof. Nocturne in English, Italian, and French where they present themselves, their roles at the Center they work, and the future actions they envision as being the new ERN ReCONNET Disease Coordinators for EDS and SS!
