Registration is open until 14 January 2024. Registration will remain open for the reserve list only until 4 February 2024.

Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.

The course is open to the international research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research on rare diseases.

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

More information and registration here

Registration is currently open but will close on April 26th.

More information and registration here.

This is the outcome of the latest international FAIR meeting on data visiting for Duchenne and other Rare Diseases, where training needs by various stakeholders were identified. It is an opportunity to understand how the FAIR principles framework makes sure that valuable data are found and reused by others to boost research and earlier diagnosis.

Learning objectives

• To understand the value and benefits of FAIR
• To show the participants tangible examples on how to query FAIR data
• To know what is needed to get started with a FAIR-related project

Time and location
7 – 9 March 2023 (Mornings) | Online
The training will be given through a Zoom webinar.

Registration
Registration is required. Click on the button below to register for the FAIR training before 20th February 2023.
The webinar link will be sent to you after registration.
Please register here before 20th February 2023

Target group
We invite all representatives of rare disease patient organizations, healthcare providers, researchers, funders, data stewards, or anyone interested in finding out more about how to make data Findable, Accessible, Interoperable and Reusable for both humans and machines to attend.

Cost: Free

Training outline
You’re welcome to attend the full or part of the program.

Programme and more information here.

As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023.

Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.

The course is open to the international research community, to clinicians and to medical specialists who have experience and concrete interest in the diagnosis and research on rare diseases.

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

Registration is mandatory and is currently open. Registration closes on February 15th.

More information and registration here: https://www.ejprarediseases.org/event/training-on-strategies-to-foster-solutions-of-undiagnosed-rare-disease-cases-3/

The course will be focused on:

• clinical research, as expected from the new Clinical Trial Regulation implementation and the Accelerating Clinical Trials in the EU initiative
• innovative methodologies including digital and in silico approaches, implemented into all the phases of drugs development, with an insight on the paediatric and rare diseases research
• challenges and opportunities of the use of Real-World Data and of a patient-centric model to boost research and innovation

Relevant stakeholders, including representatives from European Institutions, academia, companies and patients, will provide their point of view.

Registrations are open here.

A registration fee is foreseen for participants from companies and for-profit organisations only. Additional details, including the agenda, on our website.

Feel free to share the event among you contacts!

The 2023 edition of the Open Academy Schools will take place in-person from 19-23 June in Barcelona and, following a review of our training offerings, we are excited to announce a new format for our face-to-face training.

From 2023, the in-person intensive week of the Open Academy School on Medicines Research & Development (formerly EURORDIS Summer School) and the Open Academy School on Scientific Innovation & Translational Research (formerly EURORDIS Winter School) will take place during the same week, incorporating three days of parallel sessions and two days of joint sessions focusing on patient engagement across the whole life-cycle of a medicine. Greater knowledge sharing and networking opportunities will be fostered with both sets of trainees together during the week.

Registration is mandatory and open until October 31st.

Further information and a registration link are available here.

The training workshop will take place online over two days on June 14th – 15th from 09.00 – 17.00 CET.

The training workshop is organized as a series of lectures presented by experts in the specific topics. The first day of the training will focus on Data Management and Tools. The second day will cover the ELSI aspects biobanking, European privacy regulations (GDPR), ELSI considerations in genetics, and the stainability of biobanks including a discussion on public-private collaborations.

Registration for the workshop is free but mandatory and open to the international research community, clinicians, medical specialists, RD biobank managers, healthcare professionals and RD patient representatives. 

Registration closes on May 29th, and those selected to participate from among the applicants will be informed of their selection on June 2nd.

More information and registration here: https://www.ejprarediseases.org/event/genetic-biobanks-for-rare-disease-research-2/

The third run of the MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” co-developed by the European Joint Programme on Rare Diseases, ERN Ithaca, ERN Genturis and the French Foundation for Rare Diseases starts TODAY (April 18^th)! 

Registrations are free and open at this link. 

We specifically encourage medical and biomedical science students to register and follow the MOOC. 

The topics covered include:

• The diagnostic process and the types of genetic tests available for rare diseases
• The differences in rare genetic diseases patient pathways
• Technological advances for diagnostic research
• The role of collaborative studies and data sharing in rare diseases diagnosis
• The impact of having a diagnosis or lacking a diagnosis on patients’ lives
• The role and place of physiopathology approaches as well as social sciences research in the context of rare diseases diagnosis.

You can check the syllabus here.

As part of the EJP RD Training series, an advanced-level training webinar on the topic “Composite endpoints including patient relevant endpoints (Quality of Life)” aimed at introducing the generalized pairwise comparison ideas and concepts as well as demonstrating its benefit in small sample trials, more particularly in including patient relevant endpoints, such as quality of life (QoL), is being organized by Universitaetsklinikum Aachen (Germany), Istituto Ortopedico Rizzoli IRCCS (Italy) and Assistance Publique Hôpitaux de Paris (France).

The training webinar will be held on May 6th from 16.00 – 18.30 CET.

The training consists of two parts: a 1.5-hour training in relatively recent statistical inference with the flexible class of generalized pairwise comparison tests for multiple endpoints, followed by 1 hour of panel discussion with experts from regulatory, pharma-industrial, academic, and clinical fields. The event is open to the international research community, clinicians, medical specialists, healthcare professionals and advocacy patient groups with knowledge of rare disease Clinical Trials.

The training is free, and registration is mandatory. Registration closes on May 2nd.

For more information and registration: https://www.ejprarediseases.org/event/composite-endpoints-including-patient-relevant-endpoints-quality-of-life/