VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
European Reference Networks are gathering the best expertise to improve care in Rare Diseases in Europe.
- 24 ERNs covering all major Rare Disease groups – this link includes 1 factsheet per ERNs
- Officially launched and starting their work as of March 2017
- involving 25 European Union countries plus Norway
- More than 300 hospitals
- Over 900 highly specialised healthcare units
- High cooperation and involvement of pan-European and national Patient Organisations, through the European Patient Advocacy Groups (ePAGs)
The European Reference Networks (ERNs) for Rare and Low Prevalence Complex Diseases are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources
The legal basis of ERNs is the Directive 2011/24/EU on patients’ rights in cross-border healthcare. The European Commission (DG SANTE) launched the first call for ERNs in March 2016, and the first ERNs were approved by the ERN Board of Member States in December 2016 following the application and technical assessment process.
Interview of Vytenis Andriukaitis, European Commissioner for Health and Food Safety
“The value of EU collaboration is particularly clear in the case of rare and complex diseases. […] How can ERNs improve the lives of Europeans?
Patients with rare and complex conditions will be able to benefit from the best treatment and advice available for their specific condition. Their doctors will have access to a highly-specialised pool of colleagues from all over Europe.
In the first phase, over 900 healthcare units will work together in 24 thematic networks, ranging from childhood cancer to immunodeficiency.”
ERNs Launch Press Release (in all EU official languages)
ERNs Flyer (in all EU official languages):
BG = Bulgarian, CS = Czech, DA = Danish, DE = German, EL = Greek, EN = English, ES = Spanish, ET = Estonian, FI = Finnish, FR = French, HR = Croatian, HU = Hungarian, IT = Italian, LT = Lithuanian, LV = Latvian, MT = Maltese, NL = Dutch, PL = Polish, PT = Portuguese, RO = Romanian, SK = Slovak, SL = Slovene, SV = Swedish
ERNs Brochure (EN) – will be available in all languages!
ERNs Video (with English subtitles) available in our homepage
All info and updates on ERNs Policy – European Commission website, DG SANTE
