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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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.
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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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The Endo-ERN Newsletter is out now!
Read more about the New Members, Endo-ERN General Assembly, Endo-ERN Clinical Exchange programme and much more!
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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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On 1 March 2019, Faisal Ahmed was appointed as professor of medicine/endocrinology at the Leiden University.
Professor Ahmed’s Inaugural Lecture will (at last) take place Monday, April 3, 2023 in Leiden. You can now REGISTER to attend in-person.
If you would like to watch the live stream bookmark this page and tune in on the day.
Please note the event time is 1600-1700 (CET).
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The Endo-ERN Newsletter is out now!
Read more about the upcoming webinars, the second Endo-ERN Clinical Exchange program participant and much more!
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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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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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Working Group Opening: MedTech for Rare Diseases
The Therapies Scientific Committee (TSC), the Interdisciplinary Scientific Committee (ISC) and the University of Twente, the Netherlands, are jointly establishing a Working Group to explore the role and value of medical devices in rare diseases. The Working Group will primarily focus on devices used for either the treatment of rare diseases, such as implants, and devices used to support physical activities of patients, such as exoskeletons.
The development of “orphan” devices faces scientific and technological challenges, next to the need for an improved clarity regarding the requirements for specific technical [...]
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