ERN ReCONNET joins the World Scleroderma Day 2024
For the second consecutive year, ERN ReCONNET is happy to join the World Scleroderma Day on June 29th.
Follow us on our social media (LinkedIn X YouTube Instagram @Threads Facebook) to celebrate together the World Scleroderma Day!
Systemic sclerosis (SSc) is an orphan disease systemic connective tissue disease characterised by autoimmunity, fibrosis of the skin, and internal organs and vasculopathy. Unfortunately SSc has still the highest mortality among all rheumatic diseases especially in patients with lung involvement. Clinical manifestations of SSc can be extremely heterogeneous and this makes it hard to correctly predict its course especially for what concerns internal organ involvement. Clinicians often struggle to diagnose systemic sclerosis early in the disease course. These is often due to late referrals to specialized centres with expertise in managing this complex and rare disease.
The ERN ReCONNET SSc Disease Group is led by Prof. Vanessa Smith from Hospital University of Ghent (Belgium), Prof. Marco Matucci Cerinic from San Raffaele Hospital (Milan, Italy), and the ePAGs Mrs. Ilaria Galetti and Mrs. Sue Farrington actively involved in our Network and in Federation of European Scleroderma Associations (FESCA), Sue is the current president.
This group together with all its members has developed a huge set of relevant resources to support HCPs as well as patients; all the resources are freely available.
In particular, here a detailed description of SSc can be found, at the bottom of this web page an extended list of scientific publications on SSc can be read as well as a list of SSc ERN ReCONNET centers. Additionally, a list of SSc patient organizations can be found here, SSc lay versions is available here. The ERN ReCONNET YouTube Channel has a dedicated SSc Playlist where all the recorded webinars targeting HCPs and patients, families, and caregivers are collected and can be seen for free; please, subscribe to our YouTube Channel to stay always updated with our latest released videos.
Last but not least, on July 3rd at 4.00 pm CEST, our upcoming webinar is scheduled: It will be focused on how to explain SSc to family and friends that will see our SSc Disease leaders, Prof. Smith, Prof. Matucci Cerinic, ePAGs Galetti and Farrington present this important aspect associated with SSc. Registration is OPEN and FREE! We look forward to welcoming you all next week.
A special thanks goes to FESCA, an umbrella group that acts at a pan-European level to promote and achieve its objectives in alignment with the aims of the national groups it represents. As ERN ReCONNET, we appreciate FESCA support to our initiatives and actions, we congratulate to FESCA for its commitment towards persons with SSc and their families.
ERN ReCONNET is honored to have you on board with us!
