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.

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

has been extended up to 20 Dec!  

Check out the List of Speakers.

Submit your Poster.

Get the Full Program.

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.

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.

International course: Training on strategies to foster solutions of undiagnosed rare disease cases. 27 – 29 April 2020. Istituto Superiore di Sanità, Rome, Italy

This course will illustrate methodologies and tools already used internationally and will provide participants with useful examples for the resolution of undiagnosed cases.

To ensure active participation and exchange with teaching staff and participants, a maximum of 30 attendees will be admitted. 

This course foresees four fellowships for participants resident, living and working in an EU13 Country.

The course and the registration are free of charge.

27 – 29 April 2020. 

Istituto Superiore di Sanità, Rome, Italy. 

All the information and registration link can be found here.

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.

3rd Annual EpiCARE meeting. 14 - 15 February 2020. Lyon, France.


Save the date for the 3rd Annual EpiCARE meeting in Lyon! 

3rd Neuromuscular Translational Summer School 2020. 6 – 10 July 2020. Leiden, Netherlands.

The EURO-NMD and TREAT-NMD building on the past two summer schools, organize this residential course taht will furnish attendees such as researchers and clinicians with a well-rounded knowledge of the translational pathway. Attendees will also benefit from the very latest knowledge available in the neuromuscular community as this course is delivered by key stakeholder in the field.

Areas that were previously covered include…

  • Neuromuscular diseases and current care and management practices
  • Bench to bedside research
  • Challenges for rare disease therapy development and networking solutions
  • Tools of the trade for preclinical research.
  • An introduction to TACT (TREAT-NMD Advisory Committee for Therapeutics) and a TACT mock review session
  • Introduction to clinical trials
  • How the regulatory system works
  • The Industry perspective on drug development for rare diseases
  • Outcome measures used in clinical trials
  • TREAT-NMD tools for clinical trials
  • Biomarkers
  • PROM development
  • Post-marketing

To ensure a high-quality learning environment class sizes are kept deliberately small. With this in mind, it is recommended applying promptly to ensure the maximum chance of successfully securing a place at their next Summer School.

For more info click here.

EURO-NMD Annual Meeting 2020. 18 - 20 November 2020. Budapest, Hungary.

Save the date!

Further information about the programme, venue, registration and speakers will be available in due course.

For more info click here.

FAIRplus Innovation and SME Forum: Implementing FAIR data principles in industrial life science research. 29 January 2020. Cambridgeshire, United Kingdom.

The agenda includes:

  • Introduction to FAIRplus
  • Guidelines for making data FAIR
  • Flastalks from SMEs
  • Hands-on session on FAIRification

Who should attend:

  • Biotech companies owning data potentially in need of FAIRification
  • Technology companies who are planning to provide FAIRification services
  • Academic groups interested in FAIRification for their data collections

For more info, click here.

29 January 2020

Cambridgeshire, United Kingdom


  • ERN-RND. Non-progressive congenital ataxia by Dr. Alfons Macaya, neuropaediatrician from the Vall d’Hebron Hospital, Barcelona – Spain . 17 December 2019, 3 pm CET
  • EURO-NMD. Clinical evaluation of dystonia by Prof. Kailash Bhatia from the Institute of Neurology, UCL, Queen Square – London, UK. 4 February 2020, 3 pm CET

For further information and to view the full webinar curriculum of the new joint educational program that ERNs for Rare Neurological Diseases (ERN-RND) and Rare Neuromuscular Diseases (ERN-EuroNMD) have launched in collaboration with the European Academy of Neurology (EAN), please click here.