Our June newsletter features highlights from our Working Group Spring Meetings, new research publications, and more
Welcome to the June edition of the VASCERN Newsletter! This month is filled with highlights from our Working Group Spring Meetings, new research publications, and a call to raise awareness about HHT.
Featured Article
Primary Non-Aortic Lesions Are Not Rare in Marfan Syndrome and Are Associated with Aortic Dissection Independently of Age
The study sought to estimate the prevalence of primary non-aortic lesions (PNAL) unrelated to extension of aortic dissection (AD) in a cohort of patients with Marfan syndrome (MFS).
Don't miss out on our upcoming webinar with Prof. Dr. med. Markus Krämer, Neurologist at Alfried Krupp Hospital Ruettenscheid. The webinar will take place on June 13th at 17:00 CEST in German.
The month of June is dedicated to raising awareness of Hereditary Hemorrhagic Telangiectasia. We have a group dedicated to this condition and many resources to help you learn and stay informed.
An Overview of Hereditary Hemorrhagic Telangiectasia (HHT)
This Pill of Knowledge (PoK) video, subtitled in Italian, is an introduction to HHT, explaining its main clinical features (and their frequency) as well as the genetics and etiology of this rare disease.
This Pill of Knowledge (PoK) video, subtitled in Italian, is about the group of vascular diseases known as Heritable Thoracic Aortic Diseases. Both the syndromic and the non-syndromic forms of HTAD are described, and the genetics of HTAD are also explored.
Arterial Complications of Vascular Ehlers-Danlos Syndrome (vEDS)
This Pill of knowledge (PoK) video, subtitled in Italian, gives an overview of the arterial complications associated with Vascular Ehlers-Danlos Syndrome (vEDS) and the most common treatment for each type of complication.
This Pill of Knowledge (PoK) video in Italian features a conversation between two teenagers, Laura and Sven, who ask each other basic questions about living with lymphedema.
This Pill of Knowledge (PoK), subtitled in Italian, talks about the diagnostic approaches for vascular anomalies. The various types of examination and tests involved in reaching an appropriate diagnosis are described.
VASCERN VASCA Working Group Meeting | 19 June 2024
VASCERN NEUROVASC Working Group Meeting | 20 June 2024
VASCERN HTAD Working Group Meeting | 24 June 2024
VASCERN HHT Working Group Meeting | 28 June 2024
VASCERN MSA Working Group Meeting | 04 July 2024
VASCERN ePAG Working Group Meeting | 09 July 2024
Upcoming European & International Events
PIK3CA Related Conditions (PROS) Research Roundtable | 25 July 2024
The CLOVES Syndrome Community Research Roundtable meets every other month and focuses on knowledge exchange, feedback on ongoing projects, sharing work and research in progress. This roundtable is for: Basic and pre-clinical researchers in academia and industry, Graduate students, CLOVES Syndrome Community funded research grantees, and Patient advocacy organization leaders. The next roundtable is 25 July 2024.
International Vascular Biology Meeting 2024 | 2 - 5 July 2024
The IVBM2024 Vascular Biology meeting will take place in Amsterdam, the Netherlands and bring together investigators from all fields of vascular biology for the exchange of new concepts and discussions of outstanding questions in the field. Early Bird ticket until 15 April.
The annual VASCERN Days 2024 will take place in Paris, France. This annual event welcomes healthcare professionals from VASCERN Healthcare Provider (HCP) Full Members and Affiliated Partner centers, patient advocates from the VASCERN ePAG (European Patient Advocacy Group), and other key stakeholders for two days of engaging discussions and knowledge exchange.
Don't miss out on the latest discussions, achievements, and updates on our social media platforms. Follow VASCERN on social media to stay engaged with our vibrant community.
VASCERN, European Reference Network for Rare Multisystemic Vascular Diseases
46 Rue Henri Huchard, 75018 Paris, France
