The slides and recording from the webinars for ERNs, organised by RD-Connect together with ERN EURO-NMD, are now available! The three webinars that took place in September, 2018 were the following: Genomic analysis quick and easy: RD-Connect Genome-Phenome Analysis Platform (06/09/2018) Finding registries and biosamples in just a few clicks: RD-Connect …
We are delighted to report that the MSA-WG has just published their Patient Pathway on Vascular Ehlers-Danlos syndrome! Patient Pathways aim to improve the care and management of patients with a rare disease. They include the “red flags” that may lead to the suspicion of the disease, how to reach …
We are very proud to present the VASCERN Do’s and Don’ts Factsheets for Rare Vascular Disease Patients Facing Frequent Situations. These factsheets were developped in order to assist patients and the medical community in knowing the basic do’s and don’ts of common and emergency situations (e.g. delivery, anaesthesia, stroke, surgery) that need …
The VASCERN coordination team, located in Paris, France, is looking for a full-time IT Helpdesk/End-User Support Specialist and a full-time Data Manager. Read the full job descriptions (in English and French): Job offer: VASCERN – IT HELP DESK END-USER SUPPORT SPECIALIST (EN-FR)- Sept 2018 Job offer: VASCERN Data manager (EN-FR) – Sept …
VASCERN Spotlights: Professor Leo Schultze Kool VASCERN has had a great start in its first year and I really hope that we can continue the progress and keep the enthusiasm alive. We have a lot of things to do and we can really improve the quality of treatment and care …
We are thrilled to announce the publication of European Reference Network for Rare Vascular Diseases (VASCERN) Outcome Measures For the Hereditary Haemorrhagic Telangiectasia (HHT) in the Orphanet Journal of Rare Diseases (OJRD). This Clinical Position Statement is based on the 5 Outcome Measures selected by members of the VASCERN HHT-WG. …
The grant proposal for the European Joint Programme on Rare Diseases (EJP-RD) was accepted in August by the European Commission (see call information here)! This programme aims to develop an efficient model of financial support for all types of rare disease research by the creation of a research and innovation …
On 25 September 2018, the Expert Panel on Effective ways of Investing in Health will organise a Hearing on the application of the ERN model in European cross-border healthcare cooperation outside the rare diseases area (webstreamed). Read the Opinion on 22 Application of the ERN model in European cross border …
In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals …
The Aortic Disease (AD) Awareness Day will take place on September 19th, 2018. This annual event aims to raise awareness of aortic diseases by the organisation of events all around the world. The rare diseases covered by the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) are associated with an increased …