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EUSTAR Board
The work of EUSTAR is coordinated by an Executive Office comprised of clinicians, researchers, and professionals involved in scleroderma care and research. The Executive Office is supported by a group of Counsellors (clinicians, researchers, or other professionals involved in scleroderma care and research), who, together, form the EUSTAR Board. The Board is elected by the EUSTAR Consortium (the network of EUSTAR centers) every three years.
The EUSTAR Board convenes an Annual General Meeting, inviting the entire EUSTAR Consortium to participate. This meeting promotes transparency and accountability and serves as a forum for EUSTAR centers to influence the organisation’s governance and strategic direction. The current Board, elected at the 2022 meeting, will serve until 2025.
Executive Office
Prof. Francesco Del Galdo
President
A EUSTAR member since 2006, Prof. Del Galdo served as a EUSTAR counsellor from 2019 to 2022, contributing to the EUSTAR platinum project, a subgroup of patients within the EUSTAR database with high-quality clinical data and complete bio-sample availability, to inform target validation and biological endpoints in early-phase clinical trials.
X: @delgaldofrances
Prof. Marie-Elise Truchetet
Vice-President
At Bordeaux University Hospital, her clinical work focuses on systemic sclerosis, particularly joint involvement. Since 2012, she has organized a systemic sclerosis network within her hospital, including the establishment of a biological sample collection. Prof. Truchetet is also the Co-Director of the research unit "Origins and Pathogenesis of Autoimmune and Inflammatory Disorders" within the immunology laboratory ImmunoConcept UMR CNRS 5164, where she co-leads the "Inflammation and Fibrosis in Human Pathophysiology" research group. Her research is patient-centered, focusing on the causes and treatment of systemic sclerosis, including early-phase clinical trials for new therapeutic agents.
Additionally, she is a member of the RESO reference center for rare systemic autoimmune diseases and leads the systemic sclerosis section of the center.
Prof. Madelon Vonk
Treasurer
Madelon initiated a nationwide shared-care network, positioning her department as the national referral center. Her center is recognized as an NFU expertise center for systemic autoimmune diseases and is a full member of the ERN ReCONNET. With the largest SSc cohort in the Netherlands, her team has conducted impactful research on SSc epidemiology, pathophysiology, and treatment, influencing care globally. Her research emphasizes early diagnosis, treatment, and the development of personalized medicine.
She collaborates closely with patient organizations and patient partners, leading and initiating basic, translational, and clinical research, including sponsor-initiated studies. Additionally, Madelon serves on the steering committee for the EULAR update of SSc treatment recommendations and the national SSc guideline committee. From 2019 to 2022, she was a EUSTAR Counsellor and coordinated clinical projects. She is also the ERN ReCONNET coordinator for her hospital and a member of ERN LUNG for pulmonary hypertension.
Counsellors
Dr. Corrado Campochiaro
Counsellor
During his residency, Dr. Campochiaro spent 18 months as a Clinical Research Fellow in the Unit of Scleroderma and Connective Tissue Diseases at the Royal Free Hospital and University College London, working under Prof. Christopher Denton. There, he honed his expertise in the care of scleroderma patients.
Since 2019, he has been an active member of the EUSTAR Young Investigator Group, the Scleroderma Interest Group of the Italian Society of Rheumatology, and the EULAR Study Group on Microcirculation in Rheumatic Diseases. Dr. Campochiaro currently serves as a Consultant in Rheumatology and Clinical Immunology at San Raffaele Hospital in Milan and holds positions as a Lecturer in Rheumatology and Adjunct Professor in Rheumatology and Clinical Immunology.
Dr. Michael Hughes
Counsellor
Dr. Hughes completed his PhD research fellowship (2013-2016) at The University of Manchester, where he focused on treatment efficacy, pathophysiology, and local therapies for SSc-related digital ulcers. He has a strong research interest in non-invasive imaging and the development of patient-reported outcome measures, maintaining close collaborations with patient-led organizations.
In 2022, Dr. Hughes was honoured with the Edith Busch Young Investigator Award at the World Scleroderma Congress for his significant contributions to the field. He also leads the World Scleroderma Foundation's Digital Ulcer Working Group. Dr. Hughes has published extensively in both clinical and basic research, contributing to the development of SSc treatment guidelines and recommendations. He actively participates in numerous international initiatives and collaborations, including as a Fellow of the OMERACT Scleroderma Vascular Disease Working Group. He has presented and chaired sessions, including invited oral presentations, at prestigious national and international conferences and serves on the editorial boards of several international rheumatology journals. Additionally, he has led multiple studies published in high-impact journals, utilizing data from the EUSTAR registry.
Google Scholar. ORCID: 0000-0003-3361-4909
Dr. Maria Grazia Lazzaroni
Counsellor
Following her PhD, Dr. Lazzaroni continues to collaborate actively with the Oncology Unit for both clinical and research purposes. Since 2012, she has been a key member of the Pregnancy Clinic within the Rheumatology Unit, working closely with obstetricians and gynaecologists to gain expertise in the multidisciplinary management of pregnancy in women with systemic autoimmune diseases, including Systemic Sclerosis. She has also established a collaboration with paediatric neurologists and psychiatrists to evaluate the neurodevelopmental outcomes of children born to these mothers.
The University Hospital of Brescia has been a EUSTAR center since 2004, with over 600 patients recorded in the registry. Dr. Lazzaroni has been involved in numerous EUSTAR clinical projects since 2014, and she has personally coordinated multicenter studies focused on autoantibodies and cancer. An active member of the EUSTAR Young Investigators group since 2017, she served as one of its three leaders from 2020 to 2022. Additionally, she is a member of the Scleroderma Interest Group of the Italian Society of Rheumatology and a fellow for Systemic Sclerosis-related projects within the European ERN-ReCONNET network.
Twitter: @LazzaroniM. ORCID ID: 0000-0002-1860-6866
Dr. Tânia Santiago
Counsellor
Since 2018, Dr. Santiago has been pursuing her PhD at the Faculty of Medicine, University of Coimbra, with a thesis titled “Applications of Ultrasound Assessment of Skin in Patients with Systemic Sclerosis.” She currently works as a rheumatologist and co-coordinates the Raynaud and Scleroderma Clinic and Capillaroscopy unit at CHUC.
In 2020, she became the coordinator of the working group on connective tissue diseases for the Portuguese Society of Rheumatology. Additionally, she is an Assistant Professor of Rheumatology at the Faculty of Medicine, University of Coimbra. Dr. Santiago is a member of the EUSTAR Young Investigator Group and led the Skin Ultrasound Group of the World Scleroderma Foundation in 2021/22. Her main research interests include systemic sclerosis, skin ultrasound, elastography, and patient-reported outcomes.
Twitter: @TaniaLSantiago. ORCID ID: 0000-0002-1562-4022
EUSTAR Structure
The President leads EUSTAR by chairing meetings, presenting an annual report at the EULAR Congress, and reporting annually to the World Scleroderma Foundation (WSF). They ensure accurate data entry in the EUSTAR database and oversee its utilization. As the primary liaison with external parties, the President represents EUSTAR in official capacities. In their absence, the Vice-President assumes these responsibilities.
The Vice-President supports the President in all duties, and steps in when necessary, co-chairs meetings and maintains communication with Principal Investigators at EUSTAR Centers. They assist in supervising the database and presenting the annual report to the Counsellors and the EUSTAR Consortium at the EULAR Congress. Should the President be unable to serve their full term, the Vice-President succeeds to the office.
The Treasurer oversees EUSTAR’s financial matters, including managing all assets, funds, and property. They maintain accurate financial records, which are audited annually by two auditors. The auditors’ report is presented at the EULAR Congress Annual General Meeting. If the Treasurer cannot complete their term, the Board of Counsellors appoints a successor until the next meeting.
Counsellors provide guidance and support to the Executive Office in managing EUSTAR. They also record the minutes of board meetings, ensuring accurate documentation of all proceedings.
Affiliated EUSTAR Centers gain membership in the EUSTAR Consortium upon registration, confirmation by the Vice-President, and the entry of at least one patient case in the EUSTAR database. Each center is responsible for expanding the EUSTAR network in their country and raising awareness about scleroderma across political, social, and scientific platforms. The Consortium, composed of all EUSTAR Centers, convenes at the Annual General Meeting during the EULAR Congress. Each center holds one vote on any issues put forward to the Consortium.
Board members are elected by the EUSTAR Consortium for a term of 3 years, following which, elected members have the option to apply for another 3-year term in another position. All executive decisions should be unanimous among the Executive Office members and approved by the Counsellors.
2019-2022:
- Chairman: Oliver Distler
- Secretary: Anna-Maria Hoffmann-Vold
- Treasurer: Armando Gabrielli
- Counsellors: Madelon Vonk, Francesco Del Galdo, Cosimo Bruni, Alexandra Balbir-Gurman
2016-2019:
- Chairman: Yannick Allanore
- Secretary: Otylia Kowal-Bielecka
- Treasurer: Oliver Distler
- Counsellors: Duska Martinovic, Alexandra Balbir-Gurman, Armando Gabrielli, Nicolas Hunzelmann