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.
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 [...]
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)
Led by Edward Visser (The Netherlands) and Athanasia Stoupa (France)
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.
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.
The agenda of the meeting and the connection [...]
The Continuous Monitoring exercise for Endo-ERN HCPs (Full Member and Affiliated Partners) for 2023 data will run from January 1- February 29, 2024.
The European Society of Endocrinology (ESE) and the European Society for Paediatric Endocrinoogy (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.
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 [...]
Endo-ERN experts will present a case-based discussion on Tuesday, 23 January at 1500-1600 CET.
Chairman: Prof Luca Persani, Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico, Italy
Speakers Dr Irene Campi, Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico, Italy and Dr Edward Visser, Erasmus MC, University Medical Center Rotterdam, the Netherlands
1500-1515 Brief introduction Prof Luca Persani
1515-1545 Case-based discussion with Dr Campi and Dr Visser
The ECRD is the largest, patient-led rare disease policy-shaping event held in Europe. This event will take place 15-16 May, 2024 at The Square in Brussels.
By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicicans, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.
Check out the programme for more information.
Interested in submitting an abstract? The deadline is 23 February and more details can be found here.