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 [...]
Continue reading →
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 [...]
Continue reading →
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 [...]
Continue reading →
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
Continue reading →
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.
Continue reading →
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.
Continue reading →
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 [...]
Continue reading →
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 [...]
Continue reading →
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.
Continue reading →
