Short description
The primary goal of this webinar is to offer a comprehensive overview of Juvenile Systemic Sclerosis (jSSc), which encompasses various aspects, including distinctions between juvenile and adult-onset diseases in terms of clinical presentation, treatment approaches, and disease outcomes.
JSSc is considered an orphan disease, with an estimated prevalence of only 3 cases per 1,000,000 children. In 2007, the International Inceptions Cohort for jSSc was established. This international, multicenter cohort is instrumental in promoting collaborative efforts for both research and patient and thus enhancing our understanding of this rare condition. Currently, the registry is actively enrolling 245 patients.
During the webinar, recent insights derived from the registry will be presented. Additionally, recommendations for the management of jSSc patients and the main differences between adult and juvenile onset of SSc will be briefly discussed.
The overarching purpose of this webinar is to raise awareness, disseminate critical knowledge, and cultivate a collaborative environment where healthcare professionals, patients, and caregivers can engage in discussions about this challenging condition. Furthermore, this webinar is designed to heighten awareness of this rare condition among adult rheumatologists.
Program of the webinar:
- “Insights from the International Inceptions Cohort for Juvenile Systemic Sclerosis and SHARE Recommendations " (Ivan Földvari, 20 minutes)
- " Comparing Adult and Juvenile Forms: Lessons from the Literature " (Edoardo Marrani, 10 minutes)
- Discussion
Speakers
Dr. Ivan Földvari is a distinguished specialist in paediatric rheumatology, with a particular focus on juvenile onset systemic sclerosis (jSSc). He works at the Hamburger Zentrum Für Kinder- Und Jugendrheumatologie, Hamburg, Germany. His contributions to the field include serving as the Chair of the Scleroderma working group within the Pediatric Rheumatology European Society till 2023. He has played an active role in the SHARE initiative dedicated to jSSc and has made valuable contributions to the development of the EULAR/EUSTAR Treatment Guidelines for SSc. He is the principal investigator of the International Inceptions cohort for jSSc.
Dr. Edoardo Marrani is a Pediatric Rheumatology Unit, AOU Meyer IRCCS, Firenze, Italy. He is an expert working in an ERN ReCONNET Full Member center; he is a member of the ERN ReCONNET Task Force on Transitional Care recently established. Furthermore, Dr. Marrani leads the educational committee of the Scleroderma working group of the Pediatric Rheumatology European Society (PReS).
More info about Systemic sclerosis (SSc) can be found here: [ Ссылка ]
For details about the Transitional Care Task Force, please click here:
[ Ссылка ]
