The VASCERN webinar HHT and Nosebleeds took place on on Wednesday 30th March This informative webinar on HHT and nosebleeds was presented by Prof Anette KJELDSEN (HHT Center Odense University Hospital ), Prof Urban GEISTHOFF (Universitätsklinikum Gießen und Marburg), Dr Freya DROEGE (Essen University Hospital ), Dr Ruben HERMANN (CHU de Lyon HCL), …
Drug development programmes in rare diseases have many challenges, some of which differ from those facing researchers working on common diseases, like the lack of clinical research experts and the scarcity of patients. Moreover, academic sponsors and investigators end up getting involved not only in the scientific aspects of the …
VASCERN and the 24 ERNs stand in solidarity with Ukraine and its Rare Disease community. The ERNs have launched a new website (accessible in most EU languages, in Ukrainian and Russian) with contact points for each ERN by speciality as well as their list of members in Ukraine’s Border countries …
The Pediatric and Primary Lymphedema Working Group (PPL-WG) have been busy recently with the creation of two new resources, which are now available on the VASCERN website. The first is a new Dos and Don’ts Factsheet for patients on the topic of Children’s compression, which was initiated by the patient …
Rare Disease Day took place this year on February 28th, 2022 and VASCERN was happy to participate in this annual event that celebrates the rare disease community and aims to raise awareness, while highlighting the importance of attaining equity in social opportunity, healthcare, and access to diagnosis and therapies for …
The VASCERN webinar Diagnostic and Management Pathway for Capillary Malformations took place on Tuesday February 1st, 2022 and the recording is now available! This informative webinar was presented by Dr. Eulalia BASELGA TORRES, Pediatric Dermatologist from Hospital Sant Joan De Déu, Barcelona, Spain, and included an overview of the various …
A new Pill of Knowledge (PoK) video has just been released on the VASCERN Youtube channel entitled Lymphedema from a teenager’s perspective. This video, created by Lymphido Onlus (Italian Patient Association for Primary Lymphedema, member of the PPL WG ePAG) and validated by the the Pediatric and Primary Lymphedema Working …
To commemorate Rare Disease Day (February 28th), the European Joint Programme on Rare Diseases (EJP RD) is proud to announce the launch of their Instagram account and an exciting social media collaboration with #raredisease influencer Prof. Lara Bloom, President and CEO of the Ehlers-Danlos Society. On Rare Disease Day 2022, Prof. …
The European Joint Programme on Rare Diseases (EJP RD) is proud to announce a collaboration with the Critical Path Institute (C-Path) to advance technologies and methodologies that are fit for regulatory purposes to further global rare disease research and drug development. Building on their experience, both organizations will support the creation of …
In our first VASCERN Spotlights interview of 2022 we are thrilled to interview Dr. Gisela Teixido from the Hospital Universitari Vall d’Hebron in Barcelona, Spain, one of the new full Healthcare Provider (HCP) members as of January 1st, 2022. Dr. Teixido is member of the Heritable Thoracic Aortic Diseases Working …
