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!
Endo-ERN Rare Disease Day Poster
Rare Disease Day (February 28) is the perfect opportunity to remind your colleagues about your involvement with Endo-ERN.
We created an A3 poster that you can print and display in your department and/or around your hospital to raise awareness of rare disease and your involvement with Endo-ERN.
Download here (, 496 KB)
ERICA webinar: Essential requirements before thinking about a clinical trial
In the ERICA WP4 Clinical Trial Support webinar Essential requirements before thinking about a clinical trial we will provide an overview of considerations before starting a clinical trial in a study site.
All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and resources will be also provided.
Speaker: Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
Post-graduate course: Childhood Craniopharyngioma
Childhood Carniopharyngioma in 2023: Exciting times is the title of an upcoming post-graduate course organized by Endo-ERN members. This event will be held at the Princess Maxima Center, Utrecht from March 9-11, 2023.
Featuring a panel of international experts topics include:
Challenges in childhood craniopharyngioma; how to improve outcome New trials for childhood craniopharyngioma Tumor board with 4 difficult cases Models for craniopharyngiomaCheck out the complete programme here.
You can register using the link below.
Endo-ERN Endorsed Event: World MEN
Registration is now open for the World MEN: International Workshop on Multiple Endocrine Neoplasia and other Rare Endocrine Tumors. Hosted at the Palais Du Pharo, Marseille, France this event takes place April 26-28, 2023.
This event has a packed programme featuring international experts on topic such as:
Adrenals covering Pheo/PGL MTC and MEN2 Pituitary NETs Parathyroid diseases Patient expectations and unmet needsCheck out the full programme (, 2 MB) for the complete list of topics and speakers. Register using the link below.
REGISTER: Bone Curriculum Symposium and the Pre-Symposium on Rare Bone Diseases
The Bone Curriculum Symposium and the Pre-Symposium on Rare Bone Diseases organised by the KBVR / SRBR Osteoporosis and Fracture Prevention Group will be held March 16-17 at the Conference Center Het Pand, Ghent, Belgium.
The Bone Curriculum Symposium is a continuous educational lecture cycle. It includes bone biology, physiology, pathophysiology, calcium and phosphate metabolism and covers bone, calcium and phosphate disorders, osteoporosis, diagnosis, management and treatment.
A Bone Curriculum lecture cycle is covered by three consecutive yearly symposia.
Participants of three symposia are accredited the Bone Curriculum Course Certificate.
The Pre-Symposium Course on Rare Bone Diseases provides general [...]
EJP RD Training: Strategies to foster solutions of undiagnosed rare disease cases
As part of the training activities proposed by EJP RD, an 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 3-5 April 2023.
Through the presentation of sample use cases that have long eluded diagnosis, the course will provide participants with with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed rare diseases cases. Moreover, the course will facilitate networking among professionals involved in [...]
NEW SESSION ADDED: 5-year Evaluation Q&A Sessions
The 5-year Evaluation process is underway.
To support our members we will hold 4 Q&A sessions during the month of January.
Thursday, January 12 at 11:30-12:30 (CET) Monday, January 16 at 16:00-17:00 (CET) Wednesday, January 18 at 09:00-10:00 (CET) Tuesday, January 24 at 15:00-16:00 (CET) JUST ADDED: Wednesday, February 15 at 1700-1800 (CET)Please REGISTER and add to your agenda now. These webinars will be recorded and made available on our YouTube channel. Subscribe now to ensure you are kept up-to-date.
Innovative Health Initiative (IHI) launches new funding round
The Innovative Health Initiative (IHI) has launched its third call for proposals, featuring topics covering rare diseases and mental health, and addressing challenges such as disease prevention, hospital care, and patient-generated evidence.
Deadline for proposals: March 15, 2023
Details of the call, including the topic texts and information on how to apply, can be found here.
WEBINAR: Craniopharyngioma and hypothalamic obesity
Join our panel of international experts on the topic of Craniopharyngioma and hypothalamic obesity. This webinar program uniquely offers paediatric and adult endocrinology expertise, and the patient perspective.
Chairs: Prof. Nienke R. Biermasz, Leiden University Medical Center, Netherlands and Prof. Irène Netchine, Trousseau University Hospital, France
1605: Pathophysiology of hypothalamic obesity in CP patients Dr. H.W. Gan, Great Ormond Street Hospital/UCLH, UK
1620: Hypothalamic obesity in patients with CP needs individualized management Dr. Hanneke M. van Santen, University Medical Center Utrecht, Netherlands
1635: Living with CP – what are the challenges Johan De Graaf, Dutch Pituitary Foundation, Netherlands
1650: [...]
Endo-ERN and ERICA Coordinator Alberto Pereira at the International Conference on Clinical Research Networks for Rare Diseases
At a two-day conference (Dec 1-2, 2022) on clinical research networks (CRNs) for rare diseases the experts from different continents gathered in Paris to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks. Endo-ERN and ERICA Coordinator Alberto Pereira introduced the European Rare Disease Research Coordination and Support Action(ERICA) consortium achievements where all the ERNs take part to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
Want to stay up-to-date with ERICA’s activities? Subscribe to their newsletter here.
