Read the February-March edition of the Endo-ERN newsletter now! It features a report on our third annual General Assembly, the first EndoRARE webinar, past meetings, and upcoming meetings!
WEBINAR: Getting to Know Virtual Consultations
Endo-ERN is hosting a series of webinars to showcase the programmes and resources that are available to support rare disease community.
The second in the series we are delighted that our CPMS Helpdesk colleagues will present on the topic of Virtual Consultations.
This webinar is for clinicians and patients alike.
Topics that will be covered in the webinar are:
Virtual consultations in rare disease How to access a virtual consultation The role of HCP/reference centres in virtual consultations Secure technology: Clinical Patient Management Program (CPMS) Q&APresenters are the Endo-ERN Operational Helpdesk Managers Dr Julia Schneidewind, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, [...]
Endo-ERN Endorsed Event: Diabetes and Rare Endocrine Diseases
The International Society for Pediatric and Adolescent Diabetes (ISPAD) and Varna Pediatric Endocrine Society (VAPES) are hosting the 7th Annual Postgraduate Course and Conference, Diabetes and Rare Endocrine Diseases, 20-22 April, 2023 in Pomorie, Bulgaria.
This is an Endo-ERN endorsed event.
An international panel of speakers will present on topics including:
Managing a newly diagnosed with rare endocrine disease within Endo-ERN New technologies in diabetes New opportunities in the field of growth How to manage rare adrenal conditions Recognition and management of growth-restricted imprinting disordersCheck out the full programme to see the full list of sessions and
Save the date: European Calcified Tissue Society (ECTS)
Our EuRRECa and EuRR-Bone colleagues will attend the European Calcified Tissue Society (ECTS) 14-18 April in Liverpool, UK. They are busy with presentations and posters over the 5 days. Check out their activity below.
Thursday, 14 April
12:00 – 12:20 Local time (+ 5 min Q&A)
ECTS-IFMRS Workshop: New tools for advancing musculoskeletal research globally: the development of the European Registries for Rare Bone and Mineral Conditions
Dr Ana Luisa Priego Zurita, Department of Medicine, Division of Endocrinology, Leiden University Medical Centre, Leiden, NL
12:30 – 13:00 Local time (+ 5 min Q&A)
Hands on training HubLE: demonstrations EuRR-Bone’s [...]
ERICA webinar: Designing and conducting clinical trials in rare disease-what industries expect for partnering with clinical sites
This upcoming webinar that will cover the key elements for success when participating as investigator in an industry sponsored clinical trial.
There will be a specific emphasis on rare diseases, highlighting the key needs from the industry side, and the common reasons for failure.
The goal is to have a common understanding of the key requirements for conducting such studies, the issues typically encountered, and the best practices that allow to overcome the main challenges.
This webinar will also include elements around assessing feasibility, ensuring GCP compliance and data quality, and setting an optimal relationship between sponsor and site.
[...]Save the date: ESPE Annual Meeting
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.
Register for our newsletter to be kept up-to-date.
Save the date: ECE 2023
Endo-ERN will attend the European Congress of Endocrinology (ECE), Istanbul, Turkey 13-16 May, 2023.
The Endo-ERN project office will host a stand. Stop by for more information about EuRRECa, virtual consultations (CPMS) and any other membership questions that you might want to ask.
Endo-ERN ePAGs will also host a stand sharing patient information and resources. Make sure to check it out!
Please save the date for Monday, 15 May as there will be two Endo-ERN events.
Monday May 15
1020-1150 Joint ESE & Endo-ERN Joint symposium (Location details to follow)
1400-1530 SCAB Meeting (SCAB members only)
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.
