VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
The 1st VASCERN Patient Organisations’ Meet & Greet took place on January 29th, 2021 from 6:30-8pm.
This event, hosted by Eurordis, gathered patient advocates and representatives from patient organisations already members of the VASCERN European Patient Advocacy Group (ePAG) as well as other interested representatives from patient organisations and delegates of National Alliances, from countries where the ePAG has no connections yet.
The goal of this networking event was to let participants know more about VASCERN’s work, introduce them to the members of the VASCERN ePAG and show them how patient advocates and patient organisations can collaborate for the benefit of the patient community living with rare vascular diseases.
The event gathered 46 participants in total, which included Anne-Laure Aslanian, ePAG Patient Engagement Manager from Eurordis and VASCERN’s 5 ePAG Co-Chairs: Juergen Grunert, ePAG group Chair and ePAG Co-chair for MSA, Claudia CROCIONE, ePAG Co-chair for HHT, Elena De Moya Rubio, ePAG Co-chair for HTAD, Pernille Henriksen, ePAG Co-chair for PPL and Caroline Van Den Bosch, ePAG Co-chair for VASCA.
The meeting started with a general welcome and was followed by a presentation of VASCERN, introduction of the VASCERN ePAG, current challenges and a question and answer session. Then the group was divided into 5 breakout rooms where participants were grouped according to one of the 5 Rare Disease Working groups of VASCERN in order to further discuss the specific projects of each RDWG.
Overall, this first meet and greet was a great success, uniting our rare vascular disease patient community, inspiring several new patient organisations to join the VASCERN ePAG and leaving participants with a feeling of being more connected. The dedicated patient advocates of the VASCERN ePAG continue to try and enlarge the ePAG in order to have patient representation from all European countries.
If interested and/or to learn more about the VASCERN ePAG, please visit their page here