ERNICA

ERNICA

ERNICA

ERNICA

Latest News

News

ERN Hospital managers' meeting

30 July 2019

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 

Read more

An ERNICA publication!

25 July 2019

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  

Read more

Call for ERN rare disease registries

12 July 2019

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 ERNICA network will submit an application and preparations have started.  Timeline:  Call publication: 14 May 2019 Opening of submission: 21 May 2019 Deadline for applications: 10 October 2019 Starting date: March 2020

Read more