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 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
Up until the ‘call for full members’ launch date (expected September 2019), member states can designate ‘affiliated partners’. Affiliated partners are not members of an ERN and they are not required to meet the same criteria. Furthermore, if a member state already has a healthcare provider involved in the network as a full member, they cannot designate an affiliated partner. Affiliated partners are expected to provide a link to the ERN for those European countries without a healthcare provider involved. They thus address the concerns related to the geographic coverage of the networks. Affiliated partners may at a later stage, if they are healthcare providers and have the required expertise, become ERN members (in compliance with the procedures for membership applicable to any healthcare provider) More information on affiliated partnership and the application process can be found here