The European Commission has recently published some information on their website regarding the upcoming call for full membership: https://ec.europa.eu/health/ern/consultations/2019_call_membership_en They also include three key documents that candidates should use to prepare their application: https://ec.europa.eu/health/sites/health/files/ern/docs/20190827_news_en.pdf We have been informed that the call for full membership will be launched soon. This will mark the closing date for affiliated partner applications. Please contact us if you have any questions.
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 European Reference Network on rare Inherited and Congenital Anomalies (ERNICA) seeks to standardise and promote optimal patient care. In October 2018, members of the ERNICA Esophageal Workstream performed a conference to establish consensus on the management of patients with esophageal atresia (EA) and tracheoesophageal fistula (TEF) based on the latest evidence from the literature and expert opinion. The manuscript has now been published in the European Journal of Pediatric Surgery and the full text is available to read here: Link to HTML version: https://www.thieme-connect.de/products/ejournals/html/10.1055/s-0039-1693116?cooperation=FIOhxU18uaSGb1NQ1Jrr8LftHfEoPackEkQHoSOb Link to PDF version: https://www.thieme-connect.de/products/ejournals/pdf/10.1055/s-0039-1693116.pdf?cooperation=FIOhxU18uaSGb1NQ1Jrr8LftHfEoPackEkQHoSOb