International Rare Diseases
Research Consortium
(IRDiRC)
Executive Committee Meeting
23-24 September 2013
Miami
1
Agenda – September 23th
13:00
Welcome and objectives of the meeting
13:15
Roundtable with “state of play” of funding initiatives
Report from every funding body
A potential European Research Infrastructure Consortium on RD and
perspectives for enhancing international cooperation
Future plans for the E-Rare Consortium and proposed collaboration with
IRDiRC
14:00
Introduction of the Chinese Rare Disease Consortium and RD research in China
14:30
Action Plan
Report on the Working Group activities by the chairs of the SC
Proposition of Action Plan by the Scientific Secretariat
16:00
End of the day
2
Agenda – September 24th
08:00
Governance issues
Approval process for IRDiRC new members
Modification of the ‘letter of intent’ template
Modification of ‘Confidentiality and non-conflict of interest declaration
Update of the Governance document
Nominations for the Scientific Committees
10:00
Coffee Break
10:30
Next Executive Committee meetings: location and participation
10:50
Scientific Secretariat update
Communication
Data collection: update and ways to improve the system
11:20
IRDiRC conference
Debriefing of Dublin conference
Next IRDiRC conference
11:40
Outreach efforts and recruitment of new members
11:55
Relation with other international initiatives
Global alliance, Human Variome Project and ICOD
12:20
AOB
12:30
End of Meeting and lunch
3
Welcome to the new members
of the Executive Committee

Prof Qing Wang, Chinese Rare Disease Consortium

Dr Hyun-Young Park, Korea NIH
4
Roundtable with “State of play”
of funding initiatives

Report from every funding body

A potential European Research Infrastructure
Consortium on RD and perspectives for enhancing
international cooperation

Future plans for the E-Rare Consortium and
proposed collaboration with IRDiRC
5
Governance issues

Approval process for IRDiRC new member

Options after Submission to the Exec chair:
Dissemination to all Exec members + approval by mail
Dissemination to all Exec members + approval at next Exec
meeting
Direct approval by Exec chair without consultation
6
Nominations for the Scientific
Committees
Diagnostic Scientific Committee

Dr Woong-Yang Park (nomination by KNIH)

Prof Pak-Chung Sham (nomination by CRDC)
Interdisciplinary Scientific Committee

Dr Petra Kaufmann (Nomination by NINDS)
Therapies Scientific Committee

Prof Asla Pitkänen (Nomination by Academy of Finland)
7
IRDiRC conference

IRDiRC conference
 More than 400 participants from Europe, North America,
Australia and Asia
 More than 45 speakers and 5 panels discussion over 2
days
Excellent scientific program and organization
Conference report and speakers’ PowerPoint presentations
available on the IRDiRC website
8
IRDiRC conference

Next IRDiRC conference
 Location – Date – Concept – Budget
Proposition of BGI:
Shenzhen, China
(30 min by train from Hong-Kong)
Best period: October-November
Sheraton Dameisha Resort hotel
9
Outreach efforts and recruitment of
new members

Strategy ?

Type of bodies to target ?
10
Relation with other international
initiatives

Global Alliance

Human Variome Project

ICORD
11