ERN, the move is starting!

The European Reference Networks, ERN, the move is starting!

“ERN” an acronym you need to get familiar with!

EURORDIS organized in Paris on the 27-29th October, the annual meeting of the Council of European Federations (CEF), the meeting was very well attended this year because of the focus on the establishment of the European Reference Network for Rare diseases. Daniel Renault Chair of FEDERG participated to the meeting.

Recall that Eurordis has played a key role in the EUCERD committee, (the European Committee of Rare Diseases) that have paved the way to ERN.

The situations for the ERN pre-set themes are much diverse. There are thematic for which the patients organizations are scattered (for 10 themes of ERN there is, for each theme, between 20 and 100 associations members of EURORDIS) with a similar divided situation for the clinicians.

Fortunately the theme for which we are concerned “rare renal diseases” (RRD) is in a better situation on both sides. Only 10 renal associations in EURORDIS (out of 610), half of them are already member of FEDERG. Thus FEDERG is somehow legitimate to represent the patients in the ERN project on RRD.

EURORDIS will make efforts in the coming weeks to get all the groups organized into Patient Advocacy Group, that will be done for ERN but also looking beyond. Again Rare Renal is already almost done.
Officially the fist call is to be launched before March ends with 3 months for making the proposal. EURORDIS urges us to speed up the preparation steps.

For Rare Renal, a core team of nephrologists and geneticians together with FEDERG will start the preparatory works mid November. A partner meeting is to be held 12th January 2016 in Heidelberg at the invitation of Franz Schaeffer.

Photo 1 Yann Le Cam Director of EURORDIS presenting the ERN process and how patients should be organised.

Photo 2 The CEF audiences with Matt Johnson, Scientific Director of EURORDIS, presenting the process of submission and validation of the ERN projects.

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