4th Conference on European Reference Networks

Date

Wednesday 21 November 2018 from 09:00 to 17:45

Thursday 22 November 2018 from 08:45 to 17:00

Venue

  • Charlemagne Building – European Commission – Gasperi room
  • Rue de la Loi 170, 1000 Brussels – Belgium

Background 

24 ERNs were launched in March 2017 and are now operational. The ERNs’ system is a successful story. The complexity and ambition of the model implies a continuous and proactive analysis of the many challenges that ERNs are facing in the current deployment phase and those that will arise in the future.

The objectives of this year’s conference are:

  • To inform about the state of play of ERNs as a success of cross-border collaboration and new way of delivering healthcare.
  • To mark the momentum that ERNs are entering into a new life cycle: the deployment phase.
  • To present the main clinical and organisational outcomes of the networks and lessons learnt.
  • To identify the main challenges, potential improvements for the functioning and management of the networks and the way forward of the ERN system.

10 delegates from each ERN have been registered for this event and the network will share the outcome of these days with those who were unable to attend.

18th International Conference on Behçet’s Disease

18th International Conference on Behçet’s Disease, Rotterdam, the Netherlands.

The Erasmus University Medical Center in Rotterdam is a recognized Academic Center of Excellence on Behçet’s Disease in the Netherlands and participates in the European Reference Network in Behçet’s disease.

The international conferences on Behçet’s Disease are always a main event for physicians and researchers interested in Behçet’s disease. The contributors provide top oral presentations and poster sessions of accepted abstracts on a wide range of topics including basic immunology, genetics and clinical innovations. Meet-the-expert sessions will give young physicians an opportunity to share experiences with experts in the field.

http://behcet2018rotterdam.com/

European Rare Diseases Day 2018: One-year anniversary of the European Reference Networks for rare diseases

One year on from their launch, ERNs are treating more than 50 patients with rare diseases. Such is the nature of rare and complex diseases, that specialist knowledge is scarce and fragmented, and therefore often unavailable in the patient’s region or country. Case studies are used in this article by Vytenis Andriukaitis, European Commissioner for Health and Food Safety to demonstrate how this makes ERN work on rare diseases an area of enormous EU-added value; using the EU’s great pool of knowledge and expertise and by connecting our assets through ERNs can bring concrete benefits to many thousands of patients.

Creating a Sustainable Environment for Holistic & Innovative Care for Rare Diseases & Complex Conditions

12-13th April 2018, Frambu, just outside of Oslo. The location was selected as this workshop is in fact being co-organised with another important project for the rare disease/highly specialised & complex care field: INNOVcare https://innovcare.eu/events/

Although not focused solely on ERNs, the ERNs will have a particular prominence and focus in this workshop, to explore how the Networks –as key players in the RD field- can support the activities initiated by previous and current Joint Actions and the INNOVcare project, and provide insight to the rich experiences of your disease communities

Commission representations in Member States

France: https://ec.europa.eu/france/news/20180228_maladies_rares_fr

United Kingdom: https://ec.europa.eu/unitedkingdom/news/first-anniversary-eu-health-network-harnesses- knowledge-and-expertise-help-thousands-patients_en

Italy: https://ec.europa.eu/italy/news/20180228_giornata_europea_malattie_rare_it

Spain: https://ec.europa.eu/spain/news/180228_eu-day-rare-diseases-2018_es

Czech Republic: https://ec.europa.eu/czech-republic/news/180228_ERS_pro_vzacna_onemocneni_cs

Ireland: https://ec.europa.eu/ireland/news/european-rare-disease-day-2018_en

Luxembourg: https://ec.europa.eu/luxembourg/news/journ%C3%A9e-europ%C3%A9enne-des-maladies-rares-2018-premier-anniversaire-des-r%C3%A9seaux-europ%C3%A9ens-de_fr

Source: European Commission

World Primary Immunodeficiencies Week 2018 – 22nd – 29th April 2018

World PI Week offers an opportunity to inform and educate health policy-makers, schools and families, and the general public about primary immunodeficiencies (PID) to drive the earliest possible diagnosis and optimal treatment. Through events and activities promoting early recognition of PID, the read more global PID community can unite to bring about positive changes in healthcare systems and practices around the world in support of people living with PID.

http://www.worldpiweek.org/home