WINNER: Best Presentation Award in the category Oral: Clinical Trials

Congratulations to Endo-ERN researcher Edward Visser, Erasmus MC: University Medical Center Rotterdam who won the Best Presentation Award in the category ORAL: CLINICAL Trials at the ERICA GA. The topic Thyroid hormone analogue (TRIAC) therapy for resistance to thyroid hormone in children.

The aim of the European Rare Disease Research Coordination and Support Action consortium (#ERICA), in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

ERICA hosted the first ERN Research Conference with a call to submit [...]

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REPORT & PRESENTATIONS: ERNs Evaluation Results Report

ERN members participate in an annual Continuous Monitoring exercise, and in 2023 there was the first 5-year evaluation process. The EU has recently published a report that “...presents the final and overall results of the evaluation exercise, as well as a comprehensive analysis of the strengths, areas for improvement and other barriers in both the ERN system and the evaluation methodology.”

24 European Reference Networks and 836 members completed their first evaluation. The evaluation concluded that the ERN ecosystem is functioning well, delivering on highly specialist work for rare disease patients such as consultations for diagnosis and terhapies, the [...]

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PREPARE: Continuous Monitoring 2025

As we approach the end of 2024, we also approach the next Continuous Monitoring exercise that will take place between January and February 2025.

Before the end of the year there are 2 key things every Endo-ERN member should check:

Is your e-REC up to date with all new patients recorded? e-Reporting of Rare Conditions (e-REC) (lumc.nl) Have you any other Endo-ERN activities to complete and be scored on? HCP Performance Member Advice – Endo-ERN

 

If you want support in any of this please contact our Endo-ERN project mailbox.

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ENGAGED: Endo-ERN ePAG raising rare disease awareness

Endo-ERN ePAG Lexi Breen was recently a speaker at the British Association of Gender Identity Specialists (BAGIS) on the topic of Gender Incongruence in Intersex Variations. The involvement of ePAGs at larger congress programmes is to be welcomed. Endo-ERN is fortunate to have experienced ePAGs like Lexi that are able to bring the patient experience and insight to these types of audiences.

 

 

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CALL: 2025 Joint Transnational Call for Proposals on Rare Disease Therapies

The European Rare Diseases Research Alliance (ERDERA) is excited to announce the upcoming launch of its Joint Transnational Call (JTC) for Proposals 2025. Set to officially open on December 10, 2024, this call will invite research teams from across Europe and beyond to submit collaborative projects focused on “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”.

This JTC will build upon the significant progress made by previous European Joint Programme on Rare Diseases (EJP RD) calls, with the aim of fostering international partnerships to develop innovative therapies for rare diseases. National and regional [...]

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REGISTER: Upcoming Workshops Patient Rights and Rare Diseases in the European Union

The European Commission is hosting workshops in several countries with a focus on patient rights in cross-border healthcare and European Reference Networks. Registration is now open for the joint Belgium/Netherlands workshop taking place 19 November 1000-1700 (CET) Brussels, Belgium.

Upcoming other events

3 February 2025 Oradea covering Romania-Hungary

28 February, 2025 Strasbourg

 

Contact DG Sante for more information.

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ABSTRACTS OPEN: European Paediatric Neurology Society

The 16th Congress of the European Peadiatric Neurology Society (EPNS) offers classification of the event as follows: A for Acute, B for Brain, Health & Science and C for Chronic. We invited you to be part of this unique ABC format to learn, teach, meet, network and exchange ideas on an international stage. Learn more about the stimulating programme and SUBMIT your ABSTRACT. Deadline for abstract submission 15 January 2025.

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CALL: Innovative Health Initative

The Innovative Health Initiative Joint Undertaking (IHI JU) aims to enable the cross-sectional integration of technologies, know-how, products, services and workflows for people-centred healthcare. Download the Strategic Research and Innovation Agenda.

The IHI will pilot novel, applicant-driven approach to next call proposals. Key dates:

10 October: Online info session on the call and brokerage platform and event – recording

Mid October: Publication of the draft call text

12-13 November: Face-to-face brokerage event in Brussels, Belgium

14 November: Online meeting rooms made available via brokerage platform for [...]

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ACTION: ESPE Rare Disease Advisory Committee (RDAC)

Several Endo-ERN members are ambassadors for rare disease at the European Society for Paediatric Endocrinology Rare Disease Advisory Committee. They recently sent a letter to Endo-ERN outlining their priorities and planned activities:

Review the current activities of ESPE (committee by committee) in the field of rare diseases and identify opportunities for development among ESPE committees, as well as other organizations involved in the field of rare diseases

Provide recommendations to the ESPE Council on the following:

Fostering collaborations with all ERNs, including Endo-ERN and ERN-BOND Focusing on opportunities for knowledge exchange in Europe, as well as beyond Europe, which would [...]

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NOW OPEN: Clinical Exchange Programme call for applications

The second call for applications for the Endo-ERN Clincial Exchange Programme is now open! Early application is encouraged with the call closing on 30 November, 2024 for exchanges in 2025.

The ERN Clinical Exchange Programme has been designed to share knowledge, strengthen the clinical capacities across the network and to stimulate collaboration between healthcare professionals in European Reference Networks (ERNs) and beyond. The mission of Endo-ERN is to reduce present inequalities in rare disease care for patients with rare endocrine conditions.

Find out about the criteria, potential hosts and apply now.

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