Here you can find the main events organized by the EJP RD members, partners, and friends.

EJP RD on Rare Diseases Info Day and Brokerage Event. Istanbul, Turkey. 7 November 2019

TUBITAK (The Scientific and Technological Research Council of Turkey) committed ~1,5 M Euro for the EJP RD 2020 Call to support the research partners from Turkey in the funded projects. In order to facilitate international collaborations for the EJP RD JTC2020 Call, together with Sabancı University, TUBITAK is organizing a Rare Diseases Research Info Day and International Networking Event on 7 November 2019, in Istanbul, at Sabancı University Nanotechnology Research and Application Center (SUNUM).

So, if you are interested in the 2020 Call of European Joint Programme on Rare Disease (EJP RD) and you would you like to connect with potential partners from Turkish academia and industry, then the “Info Day and Brokerage event” will help you start building your consortium for the upcoming EJP RD calls that will open in December 2019.

Why participate? 

  • Get information on the upcoming call of EJP-RD
  • Present your ideas
  • Meet  potential partners and start building your consortium!

The morning session will be the Information Day ending with Flash Presentations. The afternoon session will be consisted of B2B meetings.

Travel grants

Limited funding for the networking event is available ONLY for:

  • The Principal Investigators who would be eligible and participate at the EJP RD 2020 Call as partners
  • The international participants based in one of the EJP RD member states other than Turkey

The grant is enough to cover the economy class flight ticket to İstanbul, and 100 TL of daily for the accommodation costs. Requests for such support should be detailed and fully justified when registering. Applications should be sent to event organizers by e-mail, first arrived the first served



7  November 2019.

Istanbul, Turkey.

Registration closes on 5 November!!! 

EJP RD Info Day and Brokerage Event Programme

EJP RD Infromation Day & Brokerage Event flyer

RE(ACT) Congress 2020 - IRDiRC Conference. Berlin, Germany. 11 -14 March 2020

The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium,

are glad to announce the RE(ACT) Congress 2020 and IRDiRC Conference.

This joint event will continue the RE(ACT) Congress series (6th edition) and IRDiRC Conference series (4th edition). It aims to bring together scientific leaders and experts and young scientists from a variety of breakthrough scientific fields to present cutting-edge research, exchange ideas and discuss policies related to rare diseases research. Patients and patient organizations, who are committed to research, will also be in attendance to share their experiences and perspectives.

March 11-14, 2020.

Berlin, Germany.

Do you want to know who are the speakers? Here you can find the List of Speakers!

Do you want to present a poster? Click here to get all the info on abstract submission!

Registration is NOW OPEN!!! 

Workshop and Hackathon: Molecular pathways for rare disease (FAIR) data analysis. Maastricht, The Netherlands. 26 – 29 November 2019.

The workshop is free and it will be focused on:
1. Pathway creation and curation – especially rare disease and adverse outcome pathways inspired by needs of ERNs and tox community (day 1-2)
2. FAIR data preparation (prep for pathway and network analysis) – define needs of data analysis and do first steps towards solving (day 2-3).
The workshop takes place day 1-3, after this there will be a hackathon in which we will start together solving the identified problems and test different approaches.

Everyone interested is invited to attend, particularly EUToxrisk and ERN researchers. The latter can claim cost reimbursement through the ERN Coordinator’s institution if the Coordinator’s institution has a bilateral ERN Collaboration Agreement that makes them a Linked Third Party.

26 – 29 November 2019.

Maastricht, The Netherlands.

All the information and registration link can be found here.

Innovation Bootcamp in Rare Diseases. Leuven, Belgium. 4 - 5 November 2019.

What are the key drivers and resistors in the development of diagnostics and therapeutics in rare diseases in 2019? Get economy insights in the healthcare ecosystem of rare diseases. Your update on ATMPs and innovative diagnostics. How to raise awareness on rare diseases? What about access and affordability of orphan drugs?   Do not miss out on this unique event and join us in Leuven for IBRD 2019. Looking forward to welcome you all in Leuven prof. dr. Karen Vanhoorelbeke (coordinator) and the entire PROFILE team.   The PROFILE project is funded by the HORIZON 2020 programme of the European Union.

4-5 November 2019.

Leuven, Belgium.

Program and list of speakers are available.

Registration is open, check out for the fees!

ICORD. Tel Aviv, Israel. 11 - 13 November 2019

The 14th Meeting of the International Conference on Rare Diseases and Orphan Drugs (ICORD)

ICORD is an International Society for all individuals active in rare diseases and/or orphan drugs, including health care, research, academic, industry, patients, patient groups, regulatory authorities, health authorities, and public policy professionals.

During recent decades, the awareness on problems associated with Rare Diseases has increased markedly. Moreover, the international collaboration on Rare Diseases has improved. However, there are still many unmet needs for patients with Rare Diseases, not least in developing countries.

11-13 November 2019.

Tel Aviv, Israel. 

Preliminary scientific program and list of speakers are available. Do you know that several of our EJP RD members  Dr Daria Julkowska our EJP RD Coordinator, Dr Lucia Monaco, Chair of IRDiRC, Dr Domenica Taruscio, Director of the Department of National Center for Rare Diseases at the Istituto Superiore di Sanità and also Dr Yann Le Can, co-founder of EURORDIS-Rare Diseases Europe will be given a talk there? So, don’t miss this chance and join the meeting. Dr Posada de la Paz, current President of ICORD, will welcome you!

Registration is open!

ICORD Pre conference City Exploration Flyer

ICORD Registration Doc

EURO-NMD 3rd Annual Meeting. 6 - 8 November 2019. Ferrara, Italy.

The European Reference Network for Rare Neuromuscular Diseases Euro-NMD in collaboration with the University Hospital Cona in Ferrara, Italy and the Azienda Hospedaliero Universitaria di Ferrara organize the 3rd EURO-NMD Annual Meeting. For more info, please contact Dr. Heike PASCAL at the following email:


Registration is now open!

Click here for more info.

6 – 8 November 2019.

Ferrara, Italy.