We are pleased to announce that the first PoK video from our VASCERN Pediatric and Primary Lymphedema Working Group (PPL-WG) is now available on our Youtube channel! The PoK is entitled “An Overview of Pediatric and Primary Lymphedema” and was created by Natascha Assies (NLNet), ePAG Co-chair of the PPL-WG and validated …
This May was a very busy month at VASCERN with four out of the five Rare Disease Working Groups (RDWGs) holding face-to-face meetings in various European cities. These meetings gave RDWG members the rare opportunity to sit down together and discuss their progress and action plans as well as advance …
VASCERN Spotlights: Dr Leema Robert What really interested me about the VASCERN network was that it was not just about the diagnosis but also the management of these patients. To end Ehlers-Danlos Syndrome (EDS) awareness month on a high note, we have the pleasure to present this month’s member …
The EU budget post 2020 (Multiannual Financial Framework 2021-2027) proposal has been adopted by the European Commission. For the European Reference Networks, there will be funding available from the ESF+, Horizon Europe (post Horizon 2020 Programme for Research and Development) and Digital Europe. Source: factsheet EU Health Budget for the Future …
May was Ehlers-Danlos Awareness Month! Are you now familiar with this group of rare disorders? The VASCERN Medium-Sized Arteries Working Group covers a rare subtype of this group of diseases called vascular Ehlers-Danlos Syndrome (vEDS). The ERN ReCONNET covers the other EDS subtypes. In addition to bruising and skin lucency, vEDS …
The 9th European Conference on Rare Diseases and Orphan Products (ECRD) took place from May 10-12, 2018 in Vienna Austria. This conference brought together all stakeholders from the rare disease community in order to discuss topics on research, treatment development, healthcare, social care, public health policies and support at European, …
The first two Patient Pathways, one from the HTAD-WG and one from the HHT-WG, have now been published! Patient Pathways aim to improve the care and management of patients with a rare disease. They are a very important tool used in defining the best patient care. Disease (or group of …
VASCERN Spotlights: Juergen Grunert This month it’s Juergen Grunert, the European Patient Advocacy Group (ePAG) Co-Chair for our Medium-Sized Arteries Working Group (MSA-WG), who is in the VASCERN Spotlight! Read about his most memorable moment as an ePAG representative so far and his hopes for VASCERN and for the ERNs …
A new scientific paper entitled Expert consensus recommendations on the cardiogenetic care for patients with thoracic aortic disease and their first degree relatives has been published! This consensus statement is co-authored by several of our HTAD-WG members including Dr Marlies Kempers (Radboud university medical center), Bart Loeys (University Hospital of Antwerp), …
World Health Day was held on April 7th, 2018. This yearly event, founded by the World Health Organization, aims to encourage dialogue about the importance of Universal health coverage (UHC) while pointing out the inequalities to healthcare access that currently exist in the world and even across Europe. Vytenis Andriukaitis, the …