ePAGs

Ilaria Galetti is an ERN ReCONNET ePAG representative for Systemic Sclerosis (SSc), she is also co-Chair of the Research and Quality of care WG together with Dr. Rosaria Talarico from the AOU Pisana – Azienda Ospedaliero Universitaria Pisana (Coordinating Center) (Italy).

Ilaria Galetti has been coping with Systemic Sclerosis since 1996. The diagnosis changed her life, of course, but  on the other hand gave her the opportunity to learn and work for herself and other patients, with the aim of giving equal possibilities to all patients, wherever they have the chance to live.

She hardly worked at national level with GILS (Italian Systemic Sclerosis Organization), and then through FESCA and EURORDIS at European level, where she is very active. She attended both EURORDIS Summer and Winter Schools on research and clinical  trials, the ISS school on Registries for Rare Diseases and several other courses, keeping her knowledge always updated. As soon as she heard about European Reference Networks she immediately understood that the right place to be was there.

“ERNs are the only way to change the disparity of care and cure all over Europe and also the gap in the legislation for RD patients. No more first and second class citizens: we must struggle all together, and yes, we can win!

ERN ReCONNET YouTube playlist of webinars focused on SSc is available for free, please register to our official YouTube Channel to stay always updated with our latest released videos!