On Monday June 28th at 17:00 – 18:00 CET an ERN BOND webinar about “EuRR-Bone: what and how?” will be given by Natasha Appelman-Dijkstra and Ana Priego Zurita.
ERN BOND webinar: EuRR-Bone What and how?”
Endo-ERN Newsletter May 2021
The Endo-ERN Newsletter is out now!
Read more about ERN Workshop, upcoming webinars, ERN Exchange programme and much more!
Endo-ERN webinar: Update on congenital hyperinsulinism
On Tuesday July 6th at 16:00 – 17:00 CET an Endo-ERN webinar about “Update on congenital hyperinsulinism” will be given by Oliver Blankenstein, Peter Kühnen, Sebastian Kummer, Alena Welters and Thomas Meissner from Charité – Universitätsmedizin Berlin / Universitätsklinikum Düsseldorf.
Congenital hyperinsulinism is the most frequent cause of severe transient and persistent neonatal hypoglycemia. The etiology and the clinical course are highly variable. Today, we still find a high proportion of patients suffering from hypoglycemic brain damage.
This update will focus on the rational approach to evaluation and management of a patient with suspected hyperinsulinism. Efforts to improve the [...]
Resource Webinar: hPSCreg
As part of the EJP RD Resource Webinar series, the next webinar will be dedicated to hPSCreg and will be held on June 21st.
The human pluripotent stem cell registry (hPSCreg) maintains resources to track the usage of human embryonic and induced pluripotent stem cell lines from research to clinical applications. Participants will be given an overview of hPSCreg from different stakeholder perspectives (basic and translational researchers, industry, and funders) and will learn about what data is available for each registered line and the benefits of registering lines in hPSCreg.
ERN Workshop “CLINICAL RESEARCH: THE BASICS & BEYOND WORKSHOP IN CLINICAL EPIDEMIOLOGICAL RESEARCH FOR ERNs”
In the context of EJP RD’s ERN Workshops, a face-to-face workshop on clinical epidemiological research for ERNs titled “Clinical Research: The Basics & Beyond” (consisting of presentations by experts in the field of epidemiology and a feedback session on the research projects of participants) is being organised by Prof. Olaf Dekkers and Prof. Frits Rosendaal of the Leiden University Medical Center.
The in-person event will take place over two days on 30th September and 1st October 2021 at the Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, the Netherlands.
The workshop is open [...]
IFCAH Symposium
10 years CAH Research Support
IFCAH is pleased to welcome all patients, patient’s families, researchers and clinicians to share their very last findings on CAH, obtained thanks to 10 years of IFCAH support.
EJP RD: ERN Workshops – Advances in diagnostic and therapeutic methods for lymph flow abnormalities. REGISTRATION DEADLINE: MAY 31st
A face-to-face workshop on Advances in Diagnostic and Therapeutic Methods for Lymph Flow Abnormalities (consisting of presentations by experts in the field of lymph flow and interactive sessions to train participants in performing and interpreting MR lymphangiography) is being organised by Dr Willemijn M. Klein on 9–10 September 2021, from 09.00 to 17.00 CET, in the auditorium of the Radboud University Medical Center, Nijmegen, the Netherlands. The workshop is open to medical specialists affiliated to an ERN Full Member or Affiliated Partner institution and who are involved in diagnosing or treating patients with lymph flow abnormalities. Registration closes on May [...]
Endo-ERN Newsletter April 2021
The Endo-ERN newsletter is out now!
Read more about eECE, upcoming webinars, ERICA – Kick off meeting and much more.
Kick-off meeting & 1st General Assembly of the European Rare Disease Research Coordination and Support Action – ERICA
On Thursday 27th May 2021 (from 10.00 – 16.45 h) & Friday 28th May 2021 (from 10.00 – 15.45 h) the kick-off meeting & 1st General Assembly of the European Rare Disease Research Coordination and Support Action (ERICA) will be held.
Funded under the EU research and innovation framework programme, the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, aims at building on the strength of the individual ERNs and create a platform that integrates all ERNs’ research and innovation capacity. Its overall aim is to create new intra- and inter-ERN rare disease competitive networks and [...]
Endo-ERN webinar: Clinical trials with new drugs in PWS
On Tuesday June 15th at 17:00 – 18:00 CET an Endo-ERN webinar about “Clinical trials with new drugs in PWS” will be given by prof. Maithé Tauber from CHU Toulouse, France.
Prader-Willi syndrome is a rare genetic neurodevelopmental disorder that results from the loss of gene expression of paternally inherited maternally imprinted genes of chromosome 15 at positions q11- q13. It is now admitted that the phenotype is explained by the impaired hypothalamic development and function which drives the developmental trajectory including nutritional, behavioural, endocrine and metabolic aspects. The nutritional trajectory is very specific with a paradoxical sequence that [...]
