Management office:
Dr. I.C. Meij
Robert-Rössle-Straße 10
Postfach 74 02 38
13092 Berlin-Buch
Telefon: +49-30-9406-4205
Telefax: +49-30-9406-49246
i.meij@mdc-berlin.de
http://www.eunefron.org
EUNEFRON SC meeting August 2nd, 2011
Present: Iwan, Olivier, Erik, Peter, Pierre
Absent: Nine, Dominik, Xavier
Agenda
 Upcoming (final) meeting
 Reporting 2nd period
 cystinosis database
 ethics approval Gitelman
 whatever else comes up
Upcoming meeting
Final date set to Friday 9th – Saturday 10th March 2012.
Social dinner on Friday night in Fernsehturm Berlin.
The meeting will be organised by Eunefron alone.
The current proposal is for a 2-day meeting with 2 poster sessions, 8-10 invited speakers, the rest
from us. (Draft schedule below).
Hotels and venue have been pre-booked.
The title proposed: Eunefron symposium on rare inherited kidney disorders 2012.
Informal group leader meeting on Thursday, oral management presentation.
Final summary of Eunefron results by Olivier at the end.
Reporting 2nd period
UCLON (UCL London) had to be removed as partner because the actual partner (Great Ormond
Street Hospital (GOSH)) is a separate legal entity rather than a third party. Instead, GOSH will be
included. The scientific officer has insisted to handle this before further finalising of the 2nd periodic
report.
The administrative details have been going forward steadily and we are nearly at the point to hand
in the final amendment request.
A complicating factor has been the continuous additional changes requested by the scientific officer,
particularly those that do not concern this amendment request directly and for things that were
approved in the original proposal.
The report has been delayed as well by an audit certificate. This has now been resolved.
Cystinosis database
The Italian and Belgium/Dutch ethics documents have been obtained. An English translation of the
Dutch document has been sent to CEMARA and a translation of the Italian one has been requested.
The final thing to organise before data entry can start is the official document that states the
responsible contact person. This has been requested several times now.
The French data is being entered by the new employee at Corinne’s lab.
Repeated requests for a status update from William have been made but there has not been an
answer sofar. However, a meeting is planned with John Feehally on September 30th in London to talk
about the UK Rare Kidney Disease Strategy and opportunities to integrate with our initiative, which
also includes William.
Ethics approval Gitelman database
Both in the Netherlands and in Belgium, efforts are underway to settle the ethics approval for data
entry into a Gitelman database.
Other Databases
Could we exploit the French database? Can we decide on a few diseases for the disease criteria? This
would be particularly nice to demonstrate our multilateral cooperation.
Patient organisation visit
Iwan went to Oslo and spoke about Eunefron at the European patients union meeting.
Perspectives future EU funding
Oriented more to –omics so it doesn’t look there will be follow up funding for rare disease.
Eunefron Symposium on Rare Inherited Kidney Disorders 2012
Friday,
9.3.12
Location
Charité
Medizin
8:30 – 9:00
Registration and welcome
9:00-9:10
Welcome Olivier Devuyst, Dominik
Müller
9:10-10:20
9:10-9:30
9:30-9:50
9:50-10:20
Speaker 1
Speaker 2
Invited speaker 1
10:20-10:50
Coffee break
posters
+
putting
10:50-11:10
11:10-11:30
11:30-12:00
Speaker 3
Speaker 4
Invited speaker 2
12:00-14:00
Lunch + poster session 1
up
14:00-15:30
Speaker 5
Speaker 6
Speaker 7
Invited speaker 3
15:30-15:50
Coffee break
Innere
Presentation time should
include discussion!
10:50-12:00
14:00-14:20
14:20-14:40
14:40-15:00
15:00-15:30
Attendance, Transfer
15:50-17:10
15:50-16:20
16:20-16:50
16:50-17:10
Invited speaker 4
Speaker 8
Speaker 9
17:15
Return to hotel to freshen up
19:00
Joint departure to the restaurant
20:00
Joint dinner PIs, Invited Speakers,
Associate members and guests
Saturday,
10.3.12
Symposium
Nephropaties
From 8:30
Arrival and coffee
on
Orphan
Charité Innere Medizin
9:00-10:40
9:00-9:20
9:20-9:50
9:50-10:10
10:10-10:40
Speaker 10
Invited speaker 5
Speaker 11
Invited speaker 6
10:40-11:00
Coffee break
11:00-12:30
11:00-11:20
11:20-11:40
11:40-12:10
12:10-12:30
Speaker 12
Speaker 13
Invited speaker 7
Speaker 14
12:30-14:00
Lunch break + poster session 2
14:00-15:40
14:00-14:30
14:30-14:50
14:50-15:20
15:20-15:40
Invited speaker 8
Speaker 15
Invited speaker 9
Speaker 16
15:40-16:00
Coffee Break
16:00-16:20
Speaker 17
16:20
“Closing remarks” by: O. Devuyst / D. Müller
16:30
Departure
Presentation time should
include discussion!
Presentation time should
include discussion!
Some pictures of the proposed conference room in Berlin: