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

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

Registration for the RE(ACT) Congress 2020 and IRDiRC Conference

is NOW OPEN!  

Present your poster, click here to get all the info on abstract submission!

The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium will bring together scientific leaders and experts, young scientists and patient representatives from a variety of breakthrough scientific fields to present cutting-edge research, exchange ideas and discuss policies related to rare diseases research.


  • Methodologies to assess the effect of diagnosis and therapies on RD patients
  • The orphan drug development guidebook – Galaxy Guide
  • Diagnostic, WGS, artificial intelligence, new technologies
  • Advanced therapies: gene editing, cell therapy
  • Molecular etiology of RD, innovative clinical trials, precision medicine
  • Access to diagnostic and drugs for all
  • Patient engagement in drug development and clinical trial

March 11-14, 2020.

Berlin, Germany.

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

European Conference on Rare Diseases & Orphan Products (ECRD). 15 -16 May 2020. Stockholm, Sweden.

The EJP RD is a full partner of the ECRD event!

The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

The event draws together more than 800 participants from over 50 countries around the world. Leading, inspiring and engaging all stakeholders to take action, ECRD is where innovative solutions in the rare disease field are born. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community  – patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators.

People living with a rare disease have the right to reach their highest potential of well-being; join us in ECRD 2020 Stockholm to take part in discussions to inform and build the future ecosystem for rare disease policies and services.

Program is available for consultation.

Early bird registration is open until 20 March 2020.

Submissions for poster abstracts are now open until 10th February 2020.

Applications for the Patient Advocate Fellowship Programme are now open until 2 December 2019.

For more info, click here.

15 – 16 May 2020.

Stockholm, Sweden.

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

Registration closed

Workshop and hackathon attendance is free of charge. Cost reimbursement for ERN members –through the ERN Coordinator’s institution- is possible (please read for more details).

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.

5th ERN-EuroBloodNet Scientific and Strategic Board Meeting. 13 - 14 November 2019. Barcelona, Spain.

5th ERN-EuroBloodNet Scientific and Strategic Board Meeting will analyze the current state of the art of the different actions implemented by the network. Furthermore, there will be a discussion regarding next steps taking into account the main results achieved during the first year of implementation presented by the Transversal Fields of Action (TFA) coordinators  at the last Scientific and Strategic Board (SSB) meeting.

4th ERN CRANIO Annual Meeting. 29 - 30 November 2019. Rome, Italy.

The 4th ERN CRANIO annual meeting will be hosted by Fondazione Policlinico Universitario A. Gemelli in Rome on Friday 29th – Saturday 30th November 2019. The educational session this year will focus on difficult airway including breathing and feeding difficulties.

All ERN CRANIO patient representatives are invited in addition to 3 representatives from each healthcare centre involved in the network as standard.

ERN-Skin meeting 2019. 16 December 2019. Ghent, Belgium.

The ERN- Skin meeting brings together 56 reference centers from 18 different countries across Europe and addresses the multiple conditions within the scope of rare and complex skin disorders. This year’s meeting will focus on the following 4 thematic groups:

  • Mendelian connective tissue disorders
  • Cutaneous diseases related to DNA repair disorders
  • Hydradenitis suppurativa
  • Cutaneous mosaic discorders, naevi and nevoid skin disorders, complex vascular malformations
Abstracts for poster presentation can be submitted by e-mailing to ERN-Skintraining(at)cmgg.be before November 15th, 2019. Please note that posters should have a clinical focus. Abstracts containing research data only will not be accepted. For more info about registration, abstract submission, list of speakers, and final program please click here.

World Orphan Drug Meeting. 12 - 14 November 2019. Barcelona, Spain.

The World Orphan Drug Congress and Cell & Gene Therapy is the meeting place for the rare disease community.

The agenda covers the strategic and commercial aspects of bringing new treatments to patients who suffer from rare diseases.

Government authorities, payers, industry and patient advocacy groups are all joining us. You can also meet biotech start-ups and investors who are showcasing their orphan drug technology and pipeline.

Registration is still open.

12-14 November 2019.

Barcelona, Spain. 

SpotOn 2019 Livestream: Communicating Research for Societal Impact by Springer Nature. 21 November 2019. Event Oline

SpotOn 2019 is here!

For more than ten years, the SpotOn conference has provided a fresh opportunity for discussion, collaboration and innovation in science communication. They strive to open up a conversation between researchers, the scholarly communications professionals supporting their work, and critical decision-makers, both face to face in an annual conference, and globally through virtual networks.

This year, for the 10th anniversary of SpotOn, they are turning our attention to sustainability. The 2030 Agenda for Sustainable Development, “provides a shared blueprint for peace and prosperity for people and the planet, now and into the future.” The 17 Sustainable Development Goals (SDGs) identify global grand challenges that affect us all: from health to inequality to climate action.

21 November 2019.

Online event!

AdvCompBio 2019. 28 - 29 November 2019. La Pedrera - Barcelona, Spain.

Advances in Computational Biology Conference 2019

Fostering collaboration among women scientists

The first Advances in Computational Biology conference will bring together researchers working on systems biology, omics technologies, artificial intelligence and high-performance computing with applications to biology from both the public and private sectors.

One of the main purposes of the conference is to promote and make the research done by women in the bioinformatics field visible. This is why all speakers will be women, although the conference is open to everyone. We want to create a space to foster collaborations between scientists, providing an excellent opportunity to share ideas and build research networks.

For more info, click here.

28 – 29 November 2019.

 La Pedrera – Barcelona, Spain.