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

Rare disease perspectives in Central - Eastern Europe Conference. Gdańsk, Poland. 16 September 2019

The Rare disease perspectives in Central – Eastern Europe Conference

is satellite to General Assembly meeting of the  European Joint Programme on Rare Diseases (EJP RD).

September 16, 2019.

Non-Invasive Medicine Centre, Gdańsk, POLAND.

The main aims of this conference – to discuss challenges and opportunities of rare disease research in CEE countries and areas of involvement within EJP RD for multiple stakeholders (incl. researchers, clinicians, authorities, patient organizations).

Address: Smoluchowskiego 17 street, 80-210 Gdańsk, POLAND.

Registration closes on Sept. 9th.

Rare Disease Perspectives in CEE – Conference Program

eHealth Forum. Digital transformation and globalization in healthcare. Sopot, Poland. 19 - 20 September 2019

eHealth Forum.

Digital transformation and globalization in healthcare.

The aim of the Conference is to present and discuss the key challenges and key actions in digital transformation in healthcare, including the following areas:
(a) key trends and factors of digital transformation and globalization in healthcare,
(b) improvement of the digital maturity of the health system,
(c) interoperability between multiple stakeholders along the complex healthcare
(d) key actions in e-health in Poland:
– implementation of e-health strategy,
– introduction of e-prescription, e-referral, patient portal,
– privacy and protection of medical data,
– building an information system for patients,
(e) new initiatives in the field of e-health:
– m-health and telemedicine,
– analytical and expert systems (big data),
(f) digital health as a new business area.

19 – 20 September 2019.

Sopot, Poland.

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

The EJP RD will be part of a thematic session on Friday 20th Sept. presenting “eHealth and Rare Diseases”.

Registration is still OPEN!!! 

Download the program.

eHealth Forum Program

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 : Organizing & Maximizing Rare Disease Biological Samples Data in Biobanks. Vilnius, Lithuania. 29 - 30 October 2019.

This training workshop is a part of a series of capacity building programs put forth by the European Joint Programme on Rare Diseases (EJP RD). EJP RD is a European Commission co-funded project (GA N° 825575, 2019 – 2023) with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”.

The organisation of this workshop series on biobanks and biological samples is coordinated by Fondazione Telethon, Italy. Project partners in this training series are BBMRI-ERIC, Charité – Universitatsmedizin Berlin, Institute of Health Carlos III Spain, Hacettepe University Turkey, Medical University Gdansk Poland, University Medical Centre Groningen the Netherlands and Vilnius University Hospital Lithuania.

29-30 October 2019.

Vilnius, Lithuania.

All the information and registration link can be found here. The registration application deadline is extended to 15 September!

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

The focus of this workshop is:
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.

26 – 29 November 2019.

Maastricht, The Netherlands.

All the information and registration link can be found here.

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!

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!

ESPE 2019. 19 - 21 September 2019. Vienna, Austria.

The 58th Annual ESPE – European Society for Paediatric Endocrinology – Meeting

The theme of the ESPE meeting will be “Variety and Variation in Pediatric Endocrinology” relating to the manifold clinical pictures we face in our discipline and the care that we have to exercise when using the term “normality”.

19 – 21 September 2019.

Vienna, Austria.

Endo-ERN at ESPE2019

Endo-ERN will be present at ESPE2019 with a symposium and a shared stand with EuRRECa.

Program Endo-ERN Symposium on Friday 20 September 09:30 – 11:00

  • 09:30 Olaf Hiort & Alberto Pereira : Progress in ENDO-ERN
  • 09:45 Hermann Muller: “The Lifelong management of Childhood Craniopharyngioma”
  • 10:15 Arlene Smyth (ePAG representative)
  • 10:30 Edward Visser: “Thyroid Signalling Defects”

ESID 2019. 18 - 21 September 2019. Brussels, Belgium.

The ESID 2019- European Society for Immunodeficiencies – Meeting 

The 2019 Focused Meeting of the European Society for Immunodeficiencies (ESID 2019) will be a unique meeting, focusing on the fascinating and important intertwinement between primary immunodeficiencies, infections and malignancy. ESID 2019 will also include classics such as the Educational Day, Meet the Experts and all the latest cutting edge advances in our field.

18 – 21 September 2019.

Brussels, Belgium.