Research Training Workshops for ERN members

In September 2020 the EJP RD launched its second call of the “European Reference Networks (ERNs) Training and support program” as part of the ‘Training and Empowerment’ activities that aim to fill the gap in education on rare diseases research.

The “Research Training Workshop” call is aimed at identifying workshop topics to train ERN researchers and clinicians in relevant innovative themes with a cross-ERN added value. Selected applicants will receive financial support for the organization of a 2-days workshop for 20 participants.

Training themes include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Topics have been proposed by the ERNs or by investigators belonging to EJP RD beneficiary institutions.

The second round of submission and evaluation have been finalized in December 2020 and was coordinated by Alberto Pereira. As a result, four workshops were recommended for funding (listed below). The workshops will take place in the upcoming months.

  1. The 8th international conference on Ectodermal dysplasias (Smail Hadj-Rabia, INSERM, Dept of Dermatology, Paris, France)
  2. Trans-ERN Working Group for Spina Bifida Training: Workshop for future research on innovative diagnostic and interdisciplinary treatment (Giovanni Mosiello, Bambino Gesù Pediatric and Research Hospital, Rome, Italy)
  3. ERN multidisciplinary research workshop on diagnostics and treatment of high grade endometrial cancer (Cor de Kroon, LUMC, Dept of Gynaecology, Leiden, the Netherlands)
  4. Endocrine cancer – a challenge in adults and children (Barbara Jarzab, M. Sklodowska-Curie National Research Institute of Oncology, Gliwice, Poland)

The information on their launch and more details will be provided and updated on the EJP RD website.

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EJPRD’s Internal call for innovation project in clinical trials methodology

The Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations has been launched on December 7, 2020. The call is open to EJP RD beneficiaries and their linked third parties.

The innovation methodologies topics particularly include (but are not limited to):
· Development of a disease progression model from a natural history cohort or other observational studies.

· Development and validation of a disease specific clinically meaningful outcome with special interest in PCOMs, or composite endpoints.

· Development of a design and analysis procedure for a pharmacometric model and/or bridging study.

· Development of a randomization-based model as an alternative analysis strategy and explore the level of evidence.

The call aims to encourage collaborations among groups of experts consisting of different stakeholders including methodological experts, clinicians, patients and industry (when relevant) who will jointly develop innovative ready-to-use methods to enhance RD clinical trial methodologies.


11 January 2021: A networking meeting will be held to consolidate the collaborative networks.

3 March 2021: Foreseen call closing deadline

To get more information click here:


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Launch of Exchange Programme for healthcare professionals in European Reference Networks

Knowledge sharing and stimulating collaboration between health care professionals in European Reference Networks (ERN). That is the aim of the Exchange Programme 2020-2022, funded by the European Commission. In the coming two years, three different rounds of exchanges will take place between professionals of HealthCare Providers that are member of an ERN. The first round of visits will start in March 2021.

The objective of the ERN Exchange Programme is to palliate disparities in specific knowledge or gaps in expertise by facilitating the arrival of high-level expertise in a considerable number of diseases to a big number of Healthcare Providers.

Ecorys Ltd will provide services to all European Reference Networks in the framework of the Exchange Programme of the European Commission.

More information on the Exchange Programme will follow soon.

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The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks

The European Rare disease research Coordination and support Action (ERICA) Project received a positive evaluation for a H2020 grant of 2.3 million to establish a structural framework in support of the research activities of the ERNs.

ERICA will strengthen research and innovation capacity by integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact and Innovation. This will result in safe, accessible and efficient access of therapies for the benefit of patients suffering from rare diseases and Conditions.

Rare diseases

Rare diseases are defined as diseases that affect not more than 1 person per 2000 in the European population. However, while individual rare diseases affect only a small percentage of the population, they collectively affect up to 30 million people in the EU.

A great deal of research into rare diseases is carried out at LUMC. The Ministry of Health, Welfare and Sport (VWS), has recognised 40 centres of expertise in the field of rare diseases.

European Reference Networks

In 2017, 24 European Reference Networks (ERNs) were established by the European Commission. The aim of these networks is to facilitate access to high-quality cross-border healthcare and to promote cooperation on healthcare for rare diseases between Member States.

The ERICA project builds on the strength of these individual ERNs by promoting inter-ERN research activities and by establishing close partnerships with existing European and international infrastructures and consortia involved in research and innovation in the field of rare diseases.

The ERICA Consortium consists of 29 partners, amongst which all 24 ERNs, EURORDIS, the EJP RD, Orphanet, Mapi Trust Research, and EATRIS. The ERICA Project is coordinated by Alberto Pereira (Endo-ERN coordinator, Leiden University Medical Center, The Netherlands).

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The ERN animation clip for the patients and health professionals subtitled and dubbed in all EU languages is now available

The video explains to patients affected by rare, low prevalence and complex diseases what the European Reference Networks (ERN) are and how they might support them to identify diagnosis or treatment, in the case their health professional considers the support of the ERNs is necessary.

Click here to view the video with subtitles in all EU languages and Norwegian.

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