VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
Dr. Ana Rath, Director of Orphanet, gave an interview about eHealth and its beneficial use in the European Reference Networks (ERNs) that appeared in the Rare Disease supplement from Mediaplanet UK that was distributed with The Guardian on Rare Disease Day 2018.
In this article she talks about how “technology can help the rare disease community in many ways, mainly by allowing medical expertise to come to the patients, rather than patients having to travel to access expertise”. She goes on to describe how the ERNs are now using a dedicated IT platform (the Clinical Patient Management System) in order to hold virtual consultations between medical experts from all over Europe, thereby allowing patients to take advantage of international expertise without leaving the comfort of their home.
Read the full article here