Driven by excellence and patient care, the UEMS 1st Congress will be where all stakeholders concerned by the best possible medical practice come together, connect and learn from each other.
It is also an exciting opportunity to build on the rich offerings of the UEMS and benefit from the collective expertise of Europe’s medical community.
More information or pre-registration by email or check out the website www.uems.eu
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 [...]
Current drug shortages challenge the ability for adult endocrinology to diagnose adult GH deficiency. For proper diagnosis of GH deficiency in adults it is important to understand the clinical syndrome. The development of GH deficient features in time, after adult onset GHD, after transition and treatment at the pediatric age and in elderly patients. When to test, how to test? What to use? When to treat and when to stop?
The learning objectives of this webinar are:
How to diagnose and treat adult GH deficiency Development of new diagnostics, GH secretagogues Pitfalls in the diagnosis of adult GH deficiency Patient [...]Register now for this interesting webinar focused on case presentations related to adrenoleukodystrophy.
Moderators: Prof Christina Kanaka-Gantenbein and Prof Svetlana Lajic
Case presentation, Alexandra Tsigkri, Fellow in Endocrinology, Division of Endocrinology, Diabetes and Metabolism and Aghia Sophia Endo-ERN Center for Rare Pediatric Endocrine Disorders, First Department of Pediatrics, Medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, Athens, Greece
Diagnostic work up and neurological management, Roser Pons, Professor of Pediatric Neurology, First Department of Pediatrics, medical School, National and Kapodistrian University of Athens, Aghia Sophia Children’s Hospital, Athens,
Endocrinological work up and management, Maria Dolianiti, Consultant in [...]
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 [...]
Welcome and introduction – Dr Senthil Senniappan (Liverpool, UK) – ESPE Connect Webinar Convenor
Monogenic diabetes mellitus – Dr Kashyap Patel (Exeter, UK)
Neonatal diabetes mellitus – Professor Jacques Beltrand (Paris, France)
Rare syndromic forms of diabetes mellitus – Professor Timothy Barrett (Birmingham, UK)
Panel Discussion and Q&A for all talks – All faculty
Webinar Close – Dr Senthil Senniappan
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.
Interested in partnering with ERNs for research? This informative webinar on Monday, 2 December 17:00-17:45 will provide a comprehensive overview of ERNs’ core mission within the European healthcare landscape, detailing the resources, expertise, and infrastructure ERNs offer, and illustrating how collaborations between ERNs and the private sector can accelerate rare disease research and drug development, benefiting both industry goals and public health outcomes.
Check out the full programme and register now. This webinar is organised by Together4RD and the European Rare Disease Research Coordination and Support Action [...]
