VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
VASCERN five Rare Diseases Working Groups (Hereditary Haemorrhagic Telangiectasia (HHT-WG), Heritable Thoracic Aortic Diseases (HTAD-WG), Medium Sized Arteries (vascular Ehlers Danlos Syndrome) (MSA-WG), Pediatric and Primary Lymphedema (PPL-WG), Vascular Anomalies (VASCA-WG) are virtually meeting every month since the official launch of VASCERN in March 2017, in order to work on all our Projects to improve patient care.
Our transversal Working Groups on eHealth WG (working on VASCERN Mobile APP and eLearning) Training & Education WG (working on eLearning tools), as well as Registry WG (working on VASCERN Patient Registry project) and Ethics WG have also started their monthly meetings.
Our VASCERN Patient Group (ePAG) is also having virtual monthly meetings to be involved in all our projects.
The VASCERN Council (the Chairs of our Working Groups & Coordination team) had a virtual monthly meeting in June, in order to follow-up the implementation of our action plan.
VASCERN was represented at the RD-Action workshop held in Newcastle in June, on Monitoring for ERNs. See here and here, as well as in the European Joint Programme on Rare Diseases Research meeting in Paris, see here
Besides all these virtual monthly meetings, VASCERN HTAD-WG Members have met in Italy for the Montalcino Aortic Consortium (see our twitter post here).
The HTAD-WG will meet again in Barcelona, on August 28th, as a specific HTAD-WG face-to-face meeting is organised during the European Society of Cardiology Congress.
The VASCERN PPL-WG has met in Sicilia during the International Lymphedema Framework (ILF). Prof Robert Damstra, Chair of the PPL-WG has presented VASCERN and the PPL-WG there. See our twitter post here
The VASCERN HHT-WG has met several times in Dubrovnik, Croatia, during the 12th Cure HHT International Scientific Congress in June. Dr Claire Shovlin has presented VASCERN during this Congress. See our twitter post here
Some VASCERN VASCA-WG Members had the opportunity to meet at several international vascular anomalies congresses.
VASCERN was also presented during the French FAVA-Multi National Day (French network on Rare multisystemic vascular diseases). See our twitter posts here & here
Our 1st VASCERN annual seminar will take place in Paris, October 13-14th to gather all Members & further stakeholders!
Stay Tuned!