Dr. IVAN FOELDVARI
Dr. Ivan Foeldvari, who owns and runs the Hamburg Centre for Pediatric Rheumatology, is the head of the juvenile scleroderma working group (jSScWG) of PRES. He has organised an annual educational meetig regarding juvenile scleroderma for the last four years. The jSScWG is composed of around 30 collegues, pediatric rheumatologist mostly from Europe, but some from South America and Australia, who are dedicated to the care for children with jSSc. They have an annual meeting at the annual PRES meeting. Under the direction of Dr. Foeldvari, the members of the jSScWG support a Hamburg-based inception cohort registry for patients with early-onset jSSc, who are followed prospectively using a standardised assessment (www.juvenile-scleroderma.com). Currently, this inception cohort registry has collected the data of 20 patients and continues to expand on a world-wide setting.
The jSScWG is the main organisation to distribute the current knowledge regarding diagnosis and treatment of jSSc. All members of the working group are pediatric rheumatologists interested in jSSc. The jSScWG members are currently in the process of developing European guidelines regarding diagnosis and treatment in collaboration with the clinical affairs working group of PRES.
Ivan Foeldvari, MD, Senior consultant in Pediatric Rheumatology, head of the jSScWG. Author over 10 publications regarding juvenile scleroderma. Co-author of the juvenile scleroderma classification project. Member of the OMERACT Scleroderma working group and member of the EPOS group (Expert Panel on Pulmonary Hypertension). Dr. Foeldvari is supported by a specialist study nurse Claudia Ehlers, who manages the jSScWG inception cohort database.