The 61st Annual European Society for Paediatric Endocrinology (ESPE) will take place 21-23 September in The Hague, Netherlands.
The Endo-ERN project office will attend and host a booth and a symposium.
The Endo-ERN symposium will be held on Friday, 22 September, 9:30 – 11:00. The programme is:
Perspective of Endo-ERN for the next five years
Olaf Hiort, Deputy coordinator Endo-ERN, Paediatric chair, Germany
European medicine shortages: How can we avoid a disaster for patients with rare conditions?
Johan de Graaf, Dutch Pituitary Foundation, the Netherlands
It matters – set up of clinical trials in rare disease
Peter Kühnen, Charité [...]
Continue reading →
Updated May 9
Endo-ERN has withdrawn from the ECE 2023 and the on-site SCAB meeting has been cancelled.
It is still possible to engage with Endo-ERN by:
Attending the ESE & Endo-ERN Joint Symposium Scheduling a 1:1 with the EuRRECa registries team or CPMS for virtual consultations team to setup or troubleshoot your account Check out a EuRRECa abstract presentation
All details can be found in our dedicated ECE newsletter.
Continue reading →
Our partner European Rare Disease Research Coordination and Support Action consortium (ERICA) is hosting a series of webinars focused on Clinical Trial Support.
The topic of the next webinar Definition of an orphan drug by the EMA and will be held on Tuesday, March 28 from 1230-1330.
More information including registration details are available now.
Continue reading →
Diana Kwast-Hoekstra of the Dutch Pituitary Foundation participated in the Eurordis: Rare Disease Week in Brussels. Diana is an Endo-ERN ePAG representative for MTG1.
While in Brussels, Diana and other patient representatives had the opportunity to raise awareness of rare disease in meetings with key MEPs and other policy-makers.
The delegation had Five Asks:
Advancing the development of orphan medicines Improving disability assessments Acting on mental health needs Optimising the European Health Data Space Launching a
European Action Plan for Rare Diseases Thank you Diana and Eurordis for keeping rare disease at the top of the European health agenda!
Continue reading →
The work of Endo-ERN’s ePAGs took them across the Atlantic recently as they attended the International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) meeting in Orlando, FL, USA. Attendees were treated to an international panel that covered topics such as:
Treatment challenges in various countries Role of patient support organizations Inclusion of Hormones as Essential Medicines (EML) Strategies for success Patient adherence Best practice for social media and medicine
Johan de Graaf of the Dutch Pituitary Foundation, and an ePAG for MTG6, gave a presentation Historical Review of Experiences in Merging Patient and Medical Groups that was very well received.
[...]
Continue reading →
Endo-ERN in partnership with Endocrine Connections has created a Supplemental for Rare Disease Day 2023.
Available online, and as a shareable document, this special collection is overseen by the Editor-in-Chief, Adrian Clark and our network’s guest editors George Mastorakos (National and Kapodistrian University of Athens), Violeta Iotova (Medical University of Varna), and Jérôme Bertherat (Hopital Cochin).
Click here for the Endocrine Connections Supplemental Rare Disease Day 2023. Please share with your colleagues with an interest in rare disease within the network and beyond.
Continue reading →
Postponed from March 30 to April 6 due to technical issues.
The members of Endo-ERN continue to share their expertise via webinars. This month members of main thematic group (MTG) 7 present Genetic diagnosis of azoospermia: from chromosomes to whole exome analysis.
This webinar will be chaired by Olaf Hiort, Universitätsklinikum Schleswig-Holstein, Lubeck, Germany & Luca Persani, Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico, Milano, Italy
1700 Genetic diagnosis, Csilla Krausz, University Hospital Florence, Italy
1720 Fertility in Klinefelter’s Syndrome, Giulia Rastrelli, University Hospital Florence, Italy
1740 Klinefelter’s Syndrome Patient Experience, Chris Breen, Klinefelter’s [...]
Continue reading →
