VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
On March 10th, the Neurovascular Diseases Working Group (NEUROVASC-WG) held its Spring Meeting in Milan, Italy. The meeting brought together our experts to discuss the progress of ongoing projects and future ones. The agenda included a variety of topics, ranging from updates on the upcoming VASCERN summer school and the progress of the NEUROVASC registry to case discussions and a presentation on CADASIL research by Dr. Saskia Lesnik Oberstein, a Clinical Geneticist. It was chaired by Dr. Dominique Hervé (NEUROVASC-WG Chair) and Dr. Anna Bersano (NEUROVASC-WG Co-Chair).
The meeting began with an update on the upcoming VASCERN summer school, which is a training program designed for medical interns, students, and young researchers in rare vascular diseases. The school is planned to take place in Paris by 2024. The group discussed the program and content on neurovascular diseases for the summer school.
A registry is an essential tool for understanding the prevalence and characteristics of rare vascular diseases, and it is being used to inform research and patient care. The status of the NEUROVASC-WG registry was discussed, and some progress has been made in recent months. However, there are still difficulties setting up the registry, these difficulties were discussed, and the next steps in addressing these challenges were decided.
One of the highlights of the meeting was the presentation of the CADASIL and Moyamoya Do’s and Don’ts to the NEUROVASC-WG patient representatives. These rare vascular diseases can be challenging to diagnose and manage, and medical professionals need to have access to accurate information and resources to manage these diseases. The patient representatives were enthusiastic and happy about these resources and would like to also have a patient-centered Do’s and Don’ts factsheet for CADASIL and Moyamoya.
Dr. Saskia Lesnik Oberstein did a presentation on CADASIL, in which she gave an overview of the disease, its natural history, and the variable disease severity. Another crucial part of the meeting was the CPMS case discussions. These discussions allow the experts to share their experiences and insights into challenging patient cases. These discussions help to improve patient care.
Dr. Francesco Acerbi and Prof. Markus Kramer gave an update on ongoing projects in the VASCERN transversal pregnancy working group. This group focuses on the care and management of rare vascular diseases during pregnancy. The NEUROVASC-WG is currently involved in two major projects. These projects include the analysis of a transversal survey on family planning and pregnancy and the setup of a Delphi study on the safety of medications during pregnancy.
Finally, updates were provided by the VASCERN coordination team on the progressing e-learning modules aimed at improving knowledge on CADASIL and Moyamoya. These training programs are mainly addressed to medical students and healthcare professionals. The group showed enthusiasm about the project and they agreed to work on the new modules dedicated to NEUROVASC.
Overall, the NEUROVASC Spring Meeting was an opportunity for our experts to come together, share their knowledge and experiences, and discuss ways to improve medical knowledge and patient care. Despite being in its second year of existence with relatively new members, the group is making significant progress. This is a testament to the dedication and hard work of the members, and a promising sign for its future success.