The Endo-ERN newsletter is out now!
Read more about the launch of the dedicated website to help patients and their families caught by the ongoing war in Ukraine, upcoming webinar, CPMS workshop training, new patient material, ECE and much more.
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 Endo-ERN Newsletter is out now!
Read more about the New Members, Endo-ERN General Assembly, Endo-ERN Clinical Exchange programme and much more!
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 [...]
The Endo-ERN Newsletter is out now!
Read more about the upcoming webinars, the second Endo-ERN Clinical Exchange program participant and much more!
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 [...]
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 [...]
The Endo-ERN Newsletter is out now!
Read more about the upcoming webinars & recordings, the first Endo-ERN Clinical Exchange program participant, EJP RD ERN Research Training Workshops Funding Opportunity and much more!
The first Endo-ERN participant of this exchange program is Savi Shishkov, an endocrinologist in training at the the “St. Marina” University Hospital, and a assistant in the Department of Internal Medicine of the Medical University in Varna, Bulgaria. He was motivated to apply for this fellowship because of his interest in rare endocrine disease, and expanding the international cooperation between ERN HCPs. He has started his exchange to the Leiden University Medical Center under the supervision of Endo-ERN coordinator prof.dr. A.M. Pereira Arias, and pituitary MTG leader prof.dr. N.R. Biermasz on October 5th. During the four-week program, an insight into [...]
The European Joint Programme on Rare Diseases has launch the ERN Research Training Workshops funding opportunity. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.
The workshops will be delivered as two-day events. The costs for the workshop organization will be covered up to a limit [...]
