Report of the European Conference on Rare Diseases & Orphan Products abstracts: here
Category Archives: News
VASCern Project Technical Assessment is going well, preliminary results are the following: Documentation review: out of 6 HCPs (including the Coordinating Center) selected for documentation review, 5 got positive reports. The HCP which did not receive a positive feedback will be able to provide more evidences in support to the self-assessment …
In the framework of the preparation of the Horizon 2020 calls for 2018-2020 (Societal Challenge 1, Health, Demographic change and Well-being), the European Commission has launched a Consultative Group on the European Joint Programme (EJP) project for Rare Diseases, which held its first meeting in October. Discussion are ongoing to design …
The Commission has launched the web-based EU Coding Platform to support healthcare professionals and national competent authorities in tracing donated tissues and cells from donor to recipient in the entire EU. It contains information on all 2800 tissue establishments authorised in the EU as well as categories of tissue and …
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
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 …