Endo-ERN Newsletter March 2023
Update: ECE 2023
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Endo-ERN has withdrawn from the ECE 2023 and the on-site SCAB meeting has been cancelled.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 presentationAll details can be found in our dedicated ECE newsletter.
ERICA WEBINAR: Definition of an orphan drug by the EMA
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.
Update: Rare Disease Week in Brussels
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 DiseasesThank you Diana and Eurordis for keeping rare disease at the top of the European health agenda!
Endo-ERN ePAGs at ICOSEP Orlando
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 medicineJohan 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.
[...]Available now: Rare Disease Day Supplemental
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.
Endo-ERN Special: Rare Disease Day 2023
NEW DATE: Genetic diagnosis of azoospermia: from chromosomes to whole exome analysis webinar
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 [...]
WEBINAR: Getting to Know Rare Disease Registries
Endo-ERN is hosting a series of webinars to showcase the programmes and resources that are available to support the rare disease community.
To kick-off the series we are delighted that our EuRRECa colleagues will present on the topic of Rare Disease Registries.
1600 Importance of Rare Disease Registries in the current landscape, Prof. Faisal Ahmed, PI of EuRRECa, University of Glasgow, Leiden University Medical Center
1610 Results from EuRRECa, Dr. Ana Luisa Priego Zurita, EuRRECa & EuRR-Bone Research Fellow, Leiden University Medical Center
1630 Getting started with EuRRECa, Tess de Rooij, EuRRECa & EuRR-Bone, Project Manager, Leiden University Medical Center
[...]