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 disorders
Check out the full programme to see the full list of sessions [...]
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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 [...]
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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.
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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 [...]
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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.
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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.
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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!
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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.
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