Summary of the view of all ERNs on priorities and contra-indications for COVID-19 vaccinations

2021 will be marked by the vaccination programs against SARS-CoV-2. Currently, various Member States are setting priorities in the vaccination programs for specific groups of patients, including those with rare diseases. On the other hand, there are some rare disease patients for whom vaccination can be contraindicated.

As European Reference Networks (ERNs) are formed by experts in rare diseases, we asked all ERNs to provide their opinion on the priorities and contraindications for patients with a rare disease within their network. The results are summarized in this document and were discussed during the internal ERN-Coordinator group meeting of January 27th, [...]

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ERN Research Mobility Fellowship

EJP RD pre-announced the upcoming opening of the call for Research Mobility Fellowships on the 15th of March, which aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.

The exchange can be carried out within the same ERN (Full Members and Affiliated Partners), between different ERNs (Full Members and Affiliated Partners) and between ERN Full Members / Affiliated Partners and non-ERN institutions.

Either home or host (secondment) institution must be a Full Member or Affiliated Partner of an ERN at the time when the application [...]

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Endo-ERN webinar: Pituitary Gigantism FIPA, AIP and XLAG

On Thursday April 22nd at 16:00 – 17:00 CET an Endo-ERN webinar about “Pituitary Gigantism: FIPA, AIP and XLAG” is organised. The webinar will be held by Albert Beckers and Adrian F. Daly from Centre Hospitalier Universitaire de Liège.

Pituitary gigantism is a rare and severe disease caused by growth hormone secreting pituitary adenomas. Due to its onset in childhood and adolescence, pituitary gigantism, and its lifelong disease burden, pituitary gigantism is of relevance to both pediatric and adult endocrinologists. This webinar will present the important genetic advances that have been made in pituitary gigantism and will deal with [...]

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Endo-ERN CPMS webinar: How to enroll a patient, start a panel and upload files to a panel

On Tuesday February 23rd at 17:00 CET an Endo-ERN CPMS webinar about „how to enroll a patient, start a panel and upload files to your panel“ is organised.

Danielle Steenvoorden from our Operational Helpdesk will give you a live demonstration in CPMS Training Environment followed by a live Q&A.

If you have special requests for this demonstration, you can send an e-mail to cpmshelpdesk@endo.ern-net.eu

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CALL ANNOUNCEMENT: obtain funding to conduct workshop on RESEARCH in Rare Diseases

Within the EJP-RD project the 3rd Call for Research Training Workshops is now opened (27. January-7. March 2021).

Applicants from ERN Full Members or Affiliated Partners can submit WORKSHOP TOPICS on rare diseases research to obtain funds (25.000€) in order to conduct a 2-day workshop.

For more information you can visit the website.

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Endo-ERN webinar: Molecular diagnostic testing of imprinting disorders and related growth disturbances

On Tuesday March 2nd at 17:00 – 18:00 CET an Endo-ERN webinar about “Molecular diagnostic testing of imprinting disorders and related growth disturbances” is organised. The Endo-ERN webinar will be held by Prof Thomas Eggermann from University Hospital Aachen, Germany.

Molecular diagnostic testing imprinting disorders and related growth disorders is challenging due to the broad spectrum of molecular defects. Additionally, the decision on the molecular testing algorithm is hindered by the clinical heterogeneity of these entities. However, the precise identification of the nature of the defect is often a prerequisite for the clinical management and genetic counselling. With the [...]

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17th WorldMEN meeting

The WorldMEN meeting has something different compared to all the other classical meetings: it was first created to allow for intense discussions about the discovery of the genetic etiologies of tumor syndrome in 1984. Over the last years, the WorldMEN meetings expanded the scope of their participants to a wide audience of endocrinologists, surgeons, gastroenterologists, oncologists, geneticists and more, all concerned by the diagnosis and management not only of multiple endocrine neoplasia, endocrine tumor syndromes and the various diseases they include (Von Hippel Lindau disease, pheochromocytoma and paraganglioma, pituitary tumors, neuroendocrine tumors, neurofibromatosis, calcium disorders…), but also endocrine cancers in [...]

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