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.
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
United Kingdom: https://ec.europa.eu/unitedkingdom/news/first-anniversary-eu-health-network-harnesses- knowledge-and-expertise-help-thousands-patients_en
Czech Republic: https://ec.europa.eu/czech-republic/news/180228_ERS_pro_vzacna_onemocneni_cs
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.
The Parliament Magazine, 20 February 2018
European Commission, 28 February 2018:
Politico Pro, 1 March 2018:
RARE DISEASE NETWORKS, ONE YEAR IN: The computer networks are up and running and rare disease patients are starting to enter their data. A year after their launch, the European Reference Networks are looking ahead to what it will take to truly perform their mission: connect patients with the Continent’s top experts, no matter where they live. Health Commissioner Vytenis Andriukaitis is one of the ERN’s biggest cheerleaders; he envisions them as the “backbone” of a broader pan-European health data network. Yet Andriukaitis was clear- eyed Wednesday about the three immediate challenges facing the ERN as they enter their next phase.
The first, he said, is making sure the ERN are integrated into national and regional health systems. Member countries need to assess whether they need to change their laws to aid success. It’s not yet clear how patients get referred into the ERN, and the exact definition of how member countries support the ERN is still murky.
Hospital support is the No. 2 challenge for the ERN, Andriukaitis said, with hospital managers as “key players.”
Finally, and perhaps most politically important, is pulling other countries into the networks. Right now, 25 EU countries and Norway are part of the 24 networks. A big concern has long been that the “centers of excellence” — the hubs of the ERN spokes — will be disproportionately in Western and Northern European countries. Andriukaitis said the Commission is planning to launch a call for new ERN members to join at the end of 2018. “We need to ensure that new members bring new knowledge into the networks and increase the geographical coverage,” he said at Wednesday’s event, hosted by the patient group EURORDIS. In patients’ own countries, he added, “networks need to become stronger, more productive and more accessible.”
Italy (Panorama Sanitá), 1 March 2018:
Croatia (Vecernji), 1 March 2018:
Portugal (Público), 2 March 2018:
Bulgaria (Forum Medicus), 7 March 2018 http://forummedicus.com/