3rd International Workshop on Klinefelter Syndrome, Trisomy X, and XYY

The 3rd International Workshop on Klinefelter Syndrome, Trisomy X, and XYY will be held on 12 – 14 September 2022 in Leiden.

Previous international workshops were organised in Copenhagen (2010) and Munster (2016). The Third International Workshop will take place in Leiden in 2022, the year that Leiden will be the European City of Science. In this 3rd International Workshop we would especially like to share new insights from a ‘life-course perspective’, addressing the impact of an extra X or Y chromosome throughout life. The life-course approach focuses on a healthy start to life and targets the needs of individuals [...]

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EURORDIS Black Pearl awards 2022

Recognising the outstanding achievements and exceptional work of people making a difference for the rare disease community.

Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives.

The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives.

The eleventh edition of the Awards will take place online on TUESDAY, 8th FEBRUARY 2022 from [...]

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EJP RD ERN Workshop aiming at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects

In the context of EJP RD’s ERN Workshops, an in-person workshop titled “Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment” aimed at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina Bifida – Dysraphismes C-MAVEM, Centre Hospitalier Universitaire de Rennes.

The face-to-face event (in-person on site) will take place over two days on March 31st – April 1st, 2022 at the Centre Hospitalier Universitaire de Rennes in Rennes, France.

The workshop [...]

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EuRRECa Annual Project Group Meeting 2022

EuRRECa is holding its 4th annual meeting online on Monday 14th February 2022. This meeting will showcase the activities of the EuRRECa project which was launched in 2018 and the online platform allows us to welcome all professionals, scientists and patients and patient groups who have an interest in rare endocrine and bone conditions.

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ERN Workshop on Endocrine cancer: A challenge in adults and children – 4 May 2022

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.

The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.
The workshop is open by prior registration and selection to endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists who are employees of affiliated to an [...]

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Inauguration Professor Faisal Ahmed

Faisal-Ahmed

On 1 March 2019, Faisal Ahmed was appointed as professor of medicine/endocrinology at the Leiden University.

His inauguration obviously was put on hold, but is now planned on Monday 3 April 2023 in Leiden.

More information will follow here.

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ECE 2022

Endo-ERN will be physically present at ECE2022 with a joint ESE & Endo-ERN symposium. Furthermore Endo-ERN will have its own stand, next to the stand of our EuRRECa registry.

Monday 23 May 11:50 -13:20
ESE & Endo-ERN Joint session: Retrospect and prospect

11:55 – 12:15 Roadmap of Endo-ERN – reflection of the first 5 years
Prof. Alberto Pereira & Prof. Olaf Hiort

12:15 – 12:35 Highlights of the ESE Rare disease committee
Prof. Simona Glasberg

12:35 – 12:55 Joint guideline activities of ESE and Endo-ERN – Scientific perspective and patient expectations
Prof. Anna Nordenstrom

12:55 [...]

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Second exchange visit completed in the ERN Exchange Programme

The second successful Endo-ERN exchange has been completed.

The Endo-ERN Exchange Programme participant Anna Strandqvist, a clinical psychologist working at Karolinska University Hospital in Stockholm participated in an exchange visit to share experiences on clinical practice, psychosocial care and standard procedures for psychological assessment of patients with rare conditions within Disorders of Sex development (DSD). The host for the exchange was the clinical psychologist Arianne Dessens, Erasmus Medical Center, Rotterdam and visiting professor at Ghent University. An aim for this cooperation is to establish, increase and strengthen networks for psychologists working with these patients.

This exchange opportunity was very much [...]

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