The European Economic and Social Committee (EESC) organised a memorable conference on Rare Diseases and European Reference Networks (ERNs) under the auspices of the Spanish Presidency of the Council of the EU and in cooperation with the authorities of the Basque Country, on 11 October 2023 in Bilbao. Endo-ERN staff from the project office were in attendance.
The conclusions of the conference are now available on the on the event’s webpage, where you will also find reports, photos, presentations, recordings and press articles.
The hope is that this event will be followed by many more projects where [...]
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The EMA’s Orphan Medicines Office is hosting an interactive webinar on Rare Disease Day on 29 February 2024, to answer questions that developers of products for rare diseases or researchers in this field might have on orphan designations and rare disease development. The webinar will feature:
short presentations on the background of orphan designation and the benefits it has brought to patients; a live question-and-answer session enabling participants to ask their questions on orphan medicines development to a panel of regulatory experts.
More info: Orphan medicines development – ask the European regulator | European Medicines [...]
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This training event aims to support non-commercial sponsors of clinical trials in transitioning their clinical trials that are expected to continue after 30 January 2025 from the Clinical Trials Directive to the EU Clinical Trials Regulation (Regulation (EU) No 536/2014). Moreover, the event will provide useful training in preparing new clinical trials following the Clinical Trial Regulation (CTR).
From 31 January 2025 onwards only the CTR and its Delegated Acts will apply. Sponsors, therefore, need to transition any trials that will continue after 30 January 2025 from the Clinical Trials Directive to the legal framework [...]
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The next ESE Talks…webinar is Tuesday 6 February 2024, 17:00 – 18:15 CET
Chairs: Edward Visser (The Netherlands) and Athanasia Stoupa (France)
Fetal thyroid disorders
Dominique Luton (France)
Primary congenital hypothyroidism
Nadia Schoenmakers (UK)
Secondary congenital hypothyroidism
Paul van Trotsenburg (The Netherlands)
Panel/group discussion
Led by Edward Visser (The Netherlands) and Athanasia Stoupa (France)
Register now!
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Exciting opportunities are available at one of Endo-ERN’s reference centres!
Several PhD postions are available at the University of Lubeck’s Collaborative Research Center (CRC) 1665. Sexdiversity – Determinants, Meaning and Effects of Gender Diversity in Socialcultural, Medical and Biological Contexts is dedicated to researching the diversity of biological sex over the next four years.
Check out more information about CRC 1665 and the available positions.
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On the occasion of the World Rare Disease Day, 29 February, 2024, the Ministry for Health of Malta, is hosting a one-day workshop on Cross-border Healthcare, Patients’ Rights and Rare Disease.
This workshop is being organised in collaboration with the European Commission and is being held under the auspices of the President of the Republic of Malta, His Excellency Dr. George Vella. Foreign and local speakers, including individuals with rare disease, will be coming together to share their personal experiences and provide updates on these important, under-recognized aspects of health care.
Register now.
Agenda
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The Continuous Monitoring exercise for Endo-ERN HCPs (Full Member and Affiliated Partners) for 2023 data will run from January 1- February 29, 2024.
You should’ve received an email with all the relevant information. You can also refer to this webpage and if you have further questions contact the Endo-ERN project office.
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The European Society of Endocrinology (ESE) and the European Society for Paediatric Endocrinology (ESPE) are joining forces to create a unique joint Congress in 2025.
This very special joint Congress is themed Connecting Endocrinology Across the LIfe Course and will be held 10-13 May, 2025 in Copenhagen, Denmark.
The Endo-ERN symposium is scheduled for Tuesday, 13 May, 10:30-12:00 in Hall A.
Session chairs: Alberto Pereira & Olaf Hiort, Endo-ERN co-coordinators
10:30-10:50 Endo-ERN: a key player in the triad with the European
Endocrine Societies
Alberto Pereira, the Netherlands & Olaf Hiort, Germany
10:50-11:10 Transversal Working [...]
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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 13-15 March 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 [...]
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