Workshop on Scaling Innovative Care Delivery for Rare Diseases and Complex Conditions was held in October by the INNOVCare Project. This project aims at bridging the gaps between health, social and local services to improve care of people living with rare and complex conditions. Presentations can be found here
Author Archives: Marine Hurard
The European Commission has published data from 23 EU Member States on their use of the Cross-border Healthcare Directive (legal basis for the establishment of ERNs). The European Health Commissioner Vytenis Andriukaitis emphasised the importance of this legislation for patients’ rights and regretted the low awareness among EU citizens of patients’ rights …
This survey (available in 23 EU languages) will help EURORDIS, a European non-profit and non-governmental patient-driven alliance of patient organisations, to better understand the needs of people living with a rare disease and their families in terms of social care and coordination of care. It is a part of INNOVCare, …
Following the eligibility check by the European Commission, the Independant Assessment Body (ACSA – Agencia de Calidad Sanitaria de Andalousia) has notified VASCern and its 31 HCP Member Applicants of their eligibility for the Technical Assessment. The documentation review has started for the Network and a sample of HCPs selected. …
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
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 …