The Endo-ERN newsletter is out now!
Read more about ECE2022, upcoming joint webinar with ESE, Endo-ERN and ESPE, 1st Endo-ERN clinical practice guideline and much more.
Endo-ERN Newsletter April-May 2022
General
GloBE-Reg: Global Registry For Novel Therapies In Rare Bone & Endocrine Conditions
GloBE-Reg is a new international registry project that has been launched by the Office for Rare Conditions at the University of Glasgow. The project believes that post regulatory approval studies may be more effectively performed through registry-based studies that collect relevant real world data through a joint collaborative approach between scientific centres, industry partners and medical societies. GloBE-Reg will also use this approach to serve the needs of the endocrine community for assessing longer term clinical outcomes, which are particularly important to continuously expand our scientific knowledge and improve care in children.
EJPRD ERN Workshop “Functional exploration of genetic variants in cardiac diseases
In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Functional exploration of genetic variants in cardiac diseases” aimed at presentation of functional explorations of variants of interest identified using Drosophila, C. elegans, Zebrafish and iPSc models to understand the molecular bases of genetic diseases, in particular heart and muscle diseases, is being organised by Philippe Chevalier of the Hospices Civils de Lyon.
The in-person event will take place over two days on June 14th – 15th at the Hospices Civils de Lyon in Lyon, France.
The workshop is open by prior registration and selection [...]
ERN Research Training Workshops Funding Opportunity
The ERN Research Training Workshops funding opportunity is now open for applications until April 25th. 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 topics, 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 of €25,000 (venue, administrative, [...]
Endo-ERN newsletter January – February 2022
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.
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.
[...]Endo-ERN November newsletter 2021
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!
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 [...]
Endo-ERN newsletter October 2021
The Endo-ERN Newsletter is out now!
Read more about the upcoming webinars, the second Endo-ERN Clinical Exchange program participant and much more!
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 [...]
