A new collaborative research paper titled Arrhythmia and impaired myocardial function in heritable thoracic aortic disease: An international retrospective cohort study has been published in VASCERN Special Issue of the European Journal of Medical Genetics. It is co-authored by members and affiliated partners of the VASCERN Heritable Thoracic Aortic Diseases…
ERICA Collaborative inter-ERN Research Wall: Research Wall | ERICA (erica-rd.eu) ERICA aims to promote collaborative inter- ERNs research projects. It is therefore crucial to have a centralised location to announce any new project and search for collaborators. A specific web page has been created for this purpose on the ERICA…
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…
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…
The VASCERN webinar Diagnostic and Management Pathway for Lymphatic Malformations took place on on Wednesday December 15th. This informative webinar was presented by Dr. Nader GHAFFARPOUR, Pediatric surgeon from Karolinska University Hospital in Stockholm, Sweden, and included an overview of the various types of lymphatic malformations followed by the presentation of the pathway…
Like last year, the Spring Meeting of our Medium-Sized Arteries Working Group (MSA-WG) took place online on June 3rd, 2021! Chaired by Dr. Michael Frank (MSA-WG Chair), it was attended by 7 healthcare professionals and also by European Patient Advocacy Group (ePAG) Co-Chair and Deputy Co-Chair for MSA: Juergen Grunert…
The VASCERN webinar on the topic of “HHT and the lungs“ took place on May 31st, 2021 at 6pm. This collaborative webinar involved clinicians and patient advocates from our Hereditary Haemorrhagic Telangiectasia Working Group (HHT-WG). Claudia Crocione (ePAG Co-Chair for HHT) started with a brief presentation of VASCERN and the…
Originally planned to be a face-to-face meeting, the annual Spring Meeting of the Vascular Anomalies Working Group (VASCA-WG) took place online on May 19th and May 25th, 2021. Chaired by Prof. Miikka Vikkula (VASCA-WG Chair), this meeting was attended by 17 healthcare professionals from 10 EU countries. The patients were…
