VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
The first Pill of Knowledge (PoK) by the Heritable Thoracic Aortic Diseases (HTAD) Working Group (WG) is now available on our YouTube Channel! This PoK is on the topic of Marfan Syndrome and is produced by HTAD-WG Chair Prof Julie De Backer.
This PoK gives an overview of the diagnosis of Marfan syndrome with its main clinical manifestations and diagnostic criteria described. The genetics of this rare disease are also briefly outlined in a clear and comprehensible manner. This video is a great introduction to Marfan syndrome that is suitable for both the general public and the medical community.
See the video here
PoK are the deliverable for VASCERN Work Package 4 on Pills of Knowledge, defined as short single video lessons (of approximately 3-5 minutes long) in which an expert talks about a specific topic that has been selected and validated by the Rare Disease Working Groups (RDWGs). The VASCERN eHealth-WG, chaired by Dr Alessandro Pini, holds virtual monthly meetings to define the strategy and follow-up of this WP4, which is then implemented by our 5 RDWGs.
Link to the playlist for the HTAD-WG on our YouTube Channel is here. We will add new videos shortly.
The link to this PoK, and future PoKs from the HTAD WG group, can be found on the HTAD-WG page here
We look forward to having PoKs for all of the RDWGs in the coming months!