Congratulations to Endo-ERN Network Coordinator Professor Alberto Pereira Arias for his inspiring Inaugural Lecture held last month.
The topic 2034 considered the possibilities for rare disease care during the next decade at Amsterdam UMC and beyond.
As the coordinator of two important projects that will change the rare disease landscape in Europe – Endo-ERN & ERICA – the lecture was a welcome opportunity to glimpse the future that will be the work of the next decade.
Watch the recording here.
In the context of EJP RD’s ERN Workshops, a workshop entitled “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” is being organized by Rīga Stradiņš University.
This in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April 2023 in Riga, Latvia.
Registration is open here, and closes on February 22nd.
This workshop is addressed to clinical geneticists, laboratory geneticists, breast surgeons, gynecologists, oncopsychologists, public health specialists, medical oncologists, radiologists, radiotherapists, pathologists – [...]
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)
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
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.
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.
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 [...]
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 [...]
