The availability of conferences on YouTube via the VASCERN YouTube Channel is part of our first year action plan (Work Package 7). Our objective is to share content about: VASCERN The ERNs Scientific content on Rare vascular diseases Conferences given by VASCERN Members on our area of expertise Pills of …
‘Health in the digital society’ conference, Tallinn, 17 October 2017 Message from Vytenis Andriukaitis, European Commissioner for Health and Food Safety “The public consultation drew nearly 1500 replies and showed a broad support for health related actions in the Digital Single Market. More than 90% of respondents agree that citizens …
Rare Barometer Voice is a EURORDIS initiative. “Rare Barometer Voices is a community of people living with a rare disease who are willing to participate in EURORDIS-Rare Diseases Europe surveys and studies. EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations. EURORDIS represents the …
Read the Report from RD-Connect of the Rare Diseases Registries Summer School, which took place in Rome in September. VASCERN was represented by our ePAG Representative, Christina Grabowski (Morbus Osler, Germany). As indicated by RD-Action: “The event promoted the establishment of Findable, Accessible, Interoperable, and Reusable (FAIR) rare disease registries …
Output of the RD-Action workshop on Data Standardisation, co-hosted by the European Commission (DG Sante) (April 2017) RD-Action Report on Recommended Practices for Data Standardisation in the Context of the operation of European Reference Network Read the report here
The VASCERN 1st annual seminar will take place in Paris on October 13-14! This event will gather 80 participants, including all our Members for the first time! @VASCERN Follow & tweet with us using #VASCERNdays2017 All our 31 Healthcare Providers Members will be represented by 1 or 2 representatives. 12 …
The Project coordination team based in Paris (Healthcare Provider Coordinating: Assistance Publique Hôpitaux de Paris, Hospital Bichat – Center of Reference for Marfan Syndrome and related disorders) is growing: 2 new VASCERN Coordination team members have joined Prof Guillaume Jondeau and Marine Hurard on September, 19th . The VASCERN team reinforced …
A study published in Orphanet Journal of Rare Diseases analyses the conceptual framework of European Reference Networks, established in the context of the Cross-Border Healthcare Directive (2011/24/EU). This study examines the factors affecting information and knowledge exchange and underlines the role that the ERNs will play in this exchange, with …
Set up a VASCERN free Mobile Application for IOS and Android, which will enable patients and doctors to find & reach out easily all VASCERN centers of expertise and patients associations, with their contacts and information about their expertise: this is one of our first year actions planned! Currently, all …
At the occasion of the 18th European Day for Organ Donation and Transplantation, Vytenis Andriukaitis, EU Commissioner for Health and Food Safety, highlighted during his speech the added-value of European Reference Networks for Rare Diseases: “I also want to harness the potential of a promising new initiative: European Reference Networks …
