Europe

Feuille FAVA-Multi, the French National Healthcare Network on Rare Multi-Systemic Vascular Diseases, is developping its European dimension and projects. Following the European policy on Rare Diseases, one priority is to develop European Reference Networks on Rare Diseases. To foster European cooperation in this field is indeed of very high added-value in order to overcome the challenges of rarity.

Towards a European Reference Network (ERN) on Rare Multi-Systemic Vascular Diseases 

 

 

FeuilleThe first European Reference Networks (ERNs) on Rare Diseases will be launched by the end of 2016. Accordingly, the European Commission has launched a Call for interest on ERNs on March, 16th 2016. Among 22 other thematic groups of Rare Diseases which were mentionned by the European Commission Expert Group on Rare Diseases, the ERN on Rare Multi-Systemic Vascular Diseases is to be set-up.

FeuilleERNs aim to facilitate access to diagnosis and treatment in rare or low prevalence complex diseases or conditions by pooling existing highly specialised healthcare providers across the EU who will share knowledge, experience, medical research, teaching, training, ressources and use relevant communication tools to make expertise travel rather than the patients. This will also reduce inequalities of treatment within the European Union.

FeuilleEuropean cooperation between FAVA-Multi Centres of Reference and their European partners as well as with Patient organisations has started to build together the ERN and answer to the European Commission’s Call for interest.

European Centres specialised in Marfan Syndrome and related diseases are meeting at the Symposium in Ghent on March, 8th 2016:

Please find here the presentation on ERNs

You will find all information about our ERN Rare Multisystemic Vascular Diseases on our ERN website !

Useful links 

ERN Call ERN – HP-ERN-2016   and call document

ERN Assessment Manual and Application documents for Applicants : here

 

More information

European Commission ERNs policy and  infor on calls

Board of Member States ERNs implementation strategy (January 2016)

European Commission FAQ on ERNs

RD Action Informal Q&A on ERNs

EURORDIS Q&A on ERNs 

European Commission Info Day on ERNs

 

Upcoming events here

 

Contact : marine.hurard@aphp.fr – +33 (0)1 40 25 80 66

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