1. International Rare Diseases Research Consortium (IRDiRC) Executive Committee Meeting 15 April Dublin

2. Agenda 1(2) Meeting Agenda
12:45
Welcome and adoption of agenda
13:00
Quick round table with "state of play" reports from participants
13:30
Policy Document (Scientific Committee Chairs)
- Review/discussion: proposed changes by Scientific Committees
- Discussion on policies and guidelines from the industry partners' perspective
- Decision: adoption of Policy Document
16:00
Roadmap and Gap Analysis (Support IRDiRC)
Update on state of play
16:45
Communications issues (Support IRDiRC)
- Update: Website (
- Update: Communication strategy
17:00
Governance issues (Chair / IRDiRC Scientific Committee Chairs)
- Review/decision: Governance Document amendments
- Review/decision: new nominations to Scientific Committees
- Update: Working Groups
18:00
End of meeting at European Union House
20:00
Working Dinner at the Burlington Hotel, Upper Leeson Street, Dublin 4
- Continued discussion on any outstanding issues
- Hosting of next meetings
- AOB
21:30
End of Working Dinner
Agenda 1(2)

3. Welcome to the new members of the Executive Committee
Dr Ning Li, BGI
Ms Diane Goetz, PTC Therapeutics
Dr Robert Mashal, NKT Therapeutics

4. Round table state of play updates

5. Results of latest round of EU funding for RD
€ 144 million to 26 new projects announced
Press release on 28 February 2013
Dissemination of IRDiRC video to audio-visual media
168 printed and online articles in 18 countries and some EU-wide media
62 media outlets in total ordered audio-visual material – content reached 22 countries
News about EU funding and IRDiRC reaching at least 11 million people

6. IRDiRC Policy Document
Review/discussion: proposed changes by Scientific Committees amended policy presented and revised at meeting, to be changed still is replace all RD with most RD
Discussion on policies and guidelines from the industry partners' perspective OK for industry partners present at the meeting
Decision: adoption of Policy Document adopted

7. Gap Analysis and Actionplan
Aims to guide IRDiRC members on prioritiy areas for future funding/actions
Support IRDiRC to provide the draft document (revised including comments from this meeting on the policies) to Scientific Committees/working groups for further elaboration and to presented the updated document at next ExeCom meeting
It was identified that it would be of value to discuss between different organisation types on what is perceived as gaps – could be at next Exe Com meeting?
Summarize the two existing reports on gaps in RD reserach and include in the Gap analysis

8. Governance issues: Scientific Committee nominations All approved with 3 year mandates
Therapies Committee:
Dr Robert George Schaub (nomination by NKT Therapeutics)
Dr Ellen M. Welch (nomination by PTC Therapeutics)
Dr Karin Rademaker nominated to replace Dr Marianne de Visser (nomination by ZonMw)
Diagnostics Committee:
Prof Jun Wang (nomination by BGI)
Other changes: noted
Therapies Committee:
Dr Marcela del Rio (CIEMAT-CIBER ) has left the committee