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 Oradea covering Romania-Hungary workshop taking place 5 February 1000-1700 (EET).
Upcoming other events
28 February, 2025 Strasbourg
Contact DG Sante for more information.
The Endo-ERN Transition of Care Working Group, invites you to complete this survey.
The survey aims to gather valuable insights into the current practices, challenges, and opportunities in managing the transition of care for patients with rare endocrine diseases, focusing on both pediatric and adult care perspectives.
Who should complete the survey?
Healthcare professionals directly involved in transition care for patients with rare endocrine conditions, from both pediatric and adult sides.
Time required: Approximately 15–20 minutes.
Dissemination Request
We kindly ask that the survey link be shared with all Endo-ERN members, including Reference Centres and associated [...]
The European Rare Diseases Research Alliance (ERDERA) Joint Transnational Call (JTC) for Proposals 2025 is now open! Submissions are invited from 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 funding bodies from over 30 countries, including France, Belgium, Germany, Italy, and all Baltic [...]
Endo-ERN ePAGs Johan de Graaf, Dutch Pituitary Foundation and Petra Brügmann (EMENA) with Endo-ERN colleague Emily White (Endo-ERN) and Dirk de Rijdt of the European Society Endocrinology prepared a poster Multistakeholder Mapping of Endocrine Medicine availability and shortages in Europe: Endo-ERN expert centres.
This poster was Best Poster at the European Rare Disease Research Coordination and Support Action consortium (#ERICA) at the first ERICA ERN Research Conference.
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 [...]
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 [...]
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.
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.
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 [...]
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.
