On Wednesday May 26th at 16:00 – 17:00 CET
an Endo-ERN webinar about “Rare diabetes caused by endoplasmic reticulum stress: clinical features and novel patients’ stem cell-based models” will be given by Prof. Miriam Cnop from Cliniques universitaires de Bruxelles – Hôpital Erasme.
A dozen types of rare monogenic diabetes are caused by mutations that cause pancreatic beta cell endoplasmic reticulum stress. These forms of young-onset diabetes are often associated with microcephaly. We will review clinical features and discuss novel stem cell-based models to study these diseases. Patients’ induced pluripotent stem cell-derived beta cells provide the exciting opportunity [...]
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The first issue of EuRR-Bone newsletter is out now!
Read more about e-REC, Registry Drop-in sessions, New Members of the team, EuRR-Bone Meetings and much more.
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The 8th International Disorders/Differences of Sex Development Symposium will be held as a webinar on Thursday 8th July – Friday 9th July 2021.
The programme is available on the I-DSD website.
There will be Meet the Expert sessions, Topic-specific sessions and Project workshops that will provide a platform for discussing projects that currently use data from the Registries.
Registration is free and open to all.
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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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The Endo-ERN newsletter of February 2021 is out now!
Read more about, Special supplemental issue on Rare Endocrine Conditions, ERN recommendations on COVID-19 vaccination for patients with rare diseases, upcoming/recorded webinars and much more.
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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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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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The Endo-ERN newsletter of January 2021 is out now!
Read more about upcoming Endo-ERN webinars, Special supplemental issue on Rare Endocrine Conditions, EJP RD Research Training Workshops for ERN members and much more.
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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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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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