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 [...]

Continue reading

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

Continue reading

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.

Continue reading

This entry was posted in General.

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 [...]

Continue reading

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 [...]

Continue reading

Endo-ERN CPMS webinar: How to invite members to your panel, schedule a video meeting and join a video meeting

On Thursday January 28th at 17:00 – 17:30 CET an Endo-ERN CPMS webinar about “How to invite members to your panel, schedule a video meeting and join a video meeting” is organised.

Danielle Steenvoorden from the Operational Helpdesk will give you an overview of the following steps after opening a patient panel within CPMS: how invite members and schedule and join a video meeting. At the end of this webinar there will be a live Q&A for all your questions.

This is the second part of a series of webinars about CPMS.

The first webinar “CPMS: how to enroll a [...]

Continue reading

Rare Disease Day

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there [...]

Continue reading

Research Training Workshops for ERN members

In September 2020 the EJP RD launched its second call of the “European Reference Networks (ERNs) Training and support program” as part of the ‘Training and Empowerment’ activities that aim to fill the gap in education on rare diseases research.

The “Research Training Workshop” call is aimed at identifying workshop topics to train ERN researchers and clinicians in relevant innovative themes with a cross-ERN added value. Selected applicants will receive financial support for the organization of a 2-days workshop for 20 participants.

Training themes include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, [...]

Continue reading

This entry was posted in General.