1. E-Rare and IRDiRC: Future collaboration perspectives?
Daria Julkowska
E-Rare Coordinator
5th IRDiRC Executive Committee Meeting
23 September 2013, Miami

2. E-Rare Consortium ( )
ERA-Net for Research Programmes on Rare Diseases
13 European (or Associated) Member States
17 Research (funding) Agencies/Ministries

3. E-Rare Joint Transnational Calls
JTC X X X X X X
JTC X X X X X X X X X X
JTC X/X X X X X X X X X
JTC 2012 (YI) X X X X X X X X X X
JTC X/X X X X X X X X X X X/X X X/X X
E-Rare-1
E-Rare-2
JTC 2007: 6 call partners from 6 countries
Funded
Non Funded
Teams
Consortia
JTC 2013: 17 call partners from 14 countries
Since January 2008 (JTC 2007, JTC 2009, JTC 2011 & JTC 2012): 37,5 Mio. € to support 249 research groups in 53 research consortia
The global success rate of E-RARE proposals is 11%

4. Recruitment of call partners:
E-Rare Joint Transnational Calls: PREPARATION
Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
Definition of theme
Recruitment of call partners:
E-Rare members
New funding bodies
(National agencies/ministries/private companies/private foundations or patients’ associations)
Preparation of
call documents
Funding
commitment
MoU
signature
Call pre-announcement
Call launch
VIRTUAL COMMON POT
Each agency funds only
ITS national research teams

5. + E-Rare Joint Transnational Calls: CALL SCHEDULE
Dec Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov
Call launch
Pre-
proposals
submission
Eligibility
check
1st SEC
meeting
Full
Evaluation
by experts
Rebuttal
step
Each proposal is allocated to :
2-3 external peer reviewers
1 member of the SEC
as “rapporteur”
2 members of the SEC as readers
2nd SEC +
CSC
Meeting
(funding bodies)
- Ranking of proposals based
on evaluation criteria
- Set up of the list of proposals
proposed for funding
- Selection and final decision
for funding
FUNDING
Negotiation

6. E-Rare Joint Transnational Call 2014
Theme: Development of innovative therapeutic approaches for rare diseases
Up to the pre-clinical proof-of-concept in cell or animal models
Includes: cell therapy, gene therapy, pharmacological compounds (repurposing, molecules screening in iPS cell models, exon skipping, etc)
Collaborations with SMEs and pharma are encouraged

7. E-Rare-3 in Horizon 2020
ERA-Net for research programmes on rare diseases with specific focus on IRDiRC objectives
Mostly dedicated to joint calls’ activity
Topics established in respect to IRDiRC roadmap
Possibility of first joint call with EC top up funding
Close collaboration with European Infrastructures
Possible collaboration with IRDiRC members:
As an E-Rare full member?
As a call partner?
Bilateral agreements (with E-Rare consortium, with specific country)?

8. E-Rare as a tool for IRDiRC Transnational Calls?

9. Thank you