Rare Disease Social Research Center online guest lecture

28 05 2025

The Rare Disease Social Research Center (RDSRC) at the Institute of Philosophy and Sociology PAS is happy to invite you to the upcoming online guest lecture by Dr. med. Ursula Unterberger (Orphanet Austria, Medical University Vienna).

Dr Unterberger will give a lecture entitled “Rare Diseases in Austria”.

The lecture will take place on June 3, 2025, at 3:00pm-4:30pm CET.

Please join us on zoom: LINK

Meeting ID: 988 1220 7734; Access code: 970582

This guest lecture is organized by the RDSRC as a part of the “Society and Technologies on Health and Illness” seminar series and a joint project between the Polish Academy of Sciences and the Austrian Academy of Sciences.

We look forward to seeing you!

Abstract:

Specialized clinics for a number of rare diseases (RD) have existed in Austria for a long time. Some of them were/are based on considerable funds raised by patient organizations, such as Epidermolysis bullosa Austria and Kinderkrebshilfe. Teams from Austria joined the originally French project Orphanet in 2002, but it was not before 2011 that a national RD office was founded, which then prepared the National Action Plan for RD, published in 2015. Based on this, the first clinical centers of expertise were officially designated and became members of European Reference Networks (ERNs). A team at the Medical University of Vienna is currently coordinating the European Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN).