This report (July 2016) tackles the challenges of conducting clinical trials in Rare Diseases.
Eurordis has published a call for patient representatives to join the European Patient Advocacy Group. There are EPAG for each ERN project proposal / thematic area of expertise. Patient representatives from any European Patient organisation (member or non member of EURORDIS) are called to join the EPAG and Patient Working Group…
The European Commission has published updated news on the ERN Call 2016 and ERN Assessment process. The European Commission has received 24 ERN applications; involving a total of 370 hospitals and nearly 1000 highly specialised units from 26 Countries (25 EU Member States + Norway). Next important dates: Board of Member States…
This study is a benchmark for a valid and transparent assessment of the degree of specialisation and costliness of medical equipment or infrastructure, based firstly on literature review and then on the development of scoreboards to assess cost-intensive healthcare and highly specialised healthcare. Read the study here
Commission publishes report on activities to monitor medicine safety in EU. More information here
The VASCern Project proposal including 31 Healthcare Providers Membership applications as well as the network application succeeded the first European Commission eligibility check. This was a first step of the ERN assessment process, which will run until the end of the year so that first ERN labels are delivered in January…
A new collaborative research publication has been published in the JAMA by Dr. Sophie Dupuis-Girod, Co-chair of the VASCern HHT-WG and HCP Representative of the French HHT Reference Center, Hospices Civils de Lyon: Effect of Bevacizumab Nasal Spray on Epistaxis Duration in Hereditary Hemorrhagic Telangectasia: A Randomized Clinical Trial | Sep…
An updated presentation of VASCern Members, Governance, Structure and Working Groups is available here
The European Commission has just published the Board of Member States Minutes of Meeting, which was held on March. Issues such as the importance of avoiding fragmentation, relations between ERNs and the Industry, ERN IT Platform, Affiliated Partners, endorsement of HCPs, were tackled.
The Advisory Expert Group to the European Commission (DG Research and Innovation) on H2020, Societal Challenge 1 “Health, Demographic Change and Well-being” has released its report on the Horizon 2020 programme priorities for funding in 2018-2020. Research in Rare Diseases is named as a priority by the Expert Group (report, pp.…
