Are you struggling to get a diagnosis or treatment for a rare and/or complex craniofacial anomaly or ENT disorder? Are you a healthcare professional looking for highly specialised advice?
The European Reference Network for rare and/or complex craniofacial anomalies and ENT disorders
The meeting of the ERN Hospital Managers took place in Hôpital Saint Louis (Assistance Publique – Hôpitaux de Paris) in Paris on 16th and 17th May 2019, and was attended by 75 participants including 54 hospital mangers, ERNs coordinators, Member States representatives, patient organisations and other stakeholders and experts in the field of rare diseases and ERNs. This was the third meeting organized for the hospital managers since the creation of the ERNs in 2017. The meeting was organized by the European Commission - DG SANTE. The main aim of this meeting was to consolidate the role of hospital managers in the ERN system and to help facilitate the activities and strategic position of hospitals hosting an ERN member and those who will be doing it in the future Click here to access the report.
The first issue of the European Reference Networks newsletter has now been published by the European Commission. Follow this link for the latest ERN developments and examples of good practice! https://ec.europa.eu/newsroom/sante/newsletter-specific-archive-issue.cfm?archtype=specific&newsletter_service_id=1431&newsletter_issue_id=16186&page=1&fullDate=Thu%2007%20Mar%202019&lang=default
The Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) has published the Annual Work Programme 2019 call for grants under the Third Programme for the Union’s action in the field of health (2014-2020), which includes the call for Rare disease registries for the European Reference Networks (ERNs) (PJ-01-2019)! http://ec.europa.eu/research/participants/data/ref/other_eu_prog/hp/hp_call_proposals_pj-2019_en.pdf 5/24 ERNs have already received funding from the Health Programme (Annual Work Programme 2016) and have/are currently developing their own rare disease registry. This call is now open for the remaining 19 ERNs to apply for financial support (200 000 EUR per ERN) The ERN CRANIO network will submit an application and preparations have started. Timeline: Call publication: 14 May 2019 Opening of submission: 21 May 2019 Current deadline for applications: 10 October 2019 Starting date: March 2020