ERN ReCONNET

ePAGs

Ilaria Galetti

Ilaria Galetti is an ERN ReCONNET ePAG representative for Systemic Sclerosis (SSc).

Ilaria 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.

Here is a quote from our ePAG Ilaria…

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 WEBINARS ON SSC ARE FREELY AVAILABLE.

ERN RECONNET WEBINARS WITH OUR EPAG ILARIA

EXPLAINING SYSTEMIC SCLEROSIS (SSC) TO FAMILY AND FRIENDS.

ERN ReCONNET GOOD PRACTICE SHARING INITIATIVE 2023 - 1st Edition

ERN ReCONNET GOOD PRACTICE SHARING INITIATIVE 2024 - 2nd Edition

Systemic sclerosis (SSc) patients and doctors: A win win alliance

Our ERN ReCONNET ePAG Ilaria Galetti was awarded with the European Pulmonary Fibrosis Federation (EU-PFF)
Patient Advocacy Champion Award 2024
.
Ilaria was honored with this important award for
her dedication and the impact she has truly made
in the lives of those affected by Pulmonary Fibrosis.

Subscribe to our Newsletter