Endo-ERN Newsletter September 2021 ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌
 
September 2021
 
 
 
 
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Endo-ERN webinar: Prader Willi Syndrome (PWS) Clinical management of transition of care

On Tuesday November 16th at 14:00 – 17:00 CET an Endo-ERN symposium with multiple speakers within the main thematic group of Growth & Genetic Obesity Syndromes is organised.

 
 
 
 
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Endo-ERN webinar: Challenges in the management of non-metastatic thyroid macrocarcinoma

On Thursday November 25th at 15:00 – 17:00 CET an Endo-ERN webinar with multiple speakers within the main thematic group of Thyroid is organised.

 
 
 
 
 

Recording Endo-ERN webinars

The recordings of following webinars are now available for viewing at your own convenience.

  • Overgrowth syndromes Beckwith Wiedemann syndrome and other rare conditions
  • Update on the management of 46,XX Ovarian Dysgenesis and Primary Ovarian Insufficiency
 
 
 
 
ERN logo_Exchange Programme 2021-2022
 

First Endo-ERN Clinical Exchange program participant has arrived!

  Savi

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 tertiary referral center’s outpatient clinic, including the way of shared decision making, treatment, and outcome evaluation will be offered.

 
 
 
 
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EJP RD – ERN research training workshop

Last week, the two-day hybrid EJP RD – ERN research training workshop was held on September 30th and October 1st, combining real-life, and online participation for the first time.  The workshop, organized by prof.dr. Olaf Dekkers of the Leiden University Medical Center, was titled Clinical Research: The Basics & Beyond – Workshop in clinical epidemiological research for ERNs and took place in Leiden, the Netherlands.

As many, if not all, of you are aware of, research on rare conditions can be a great challenge, both from a practical and methodological point of view. Large, collaborative, international datasets and registries are currently being erected for multiple disease groups to counteract the otherwise small study populations. Analyzing, and subsequently drawing conclusions based on these datasets requires knowledge of the appropriate epidemiological techniques. Therefore, this workshop aimed to provide participants with the theoretical and practical knowledge needed to perform clinical epidemiological analyses appropriate for the emerging landscape of European, and ERN based large datasets.

The workshop was opened by Endo-ERN coordinator prof.dr. Alberto Pereira. Four internationally renowned experts in Clinical Epidemiology provided the interactive plenary sessions for the 25 participants (21 individuals participating in real-life, and 4 individuals participating virtually). In the forum part of the workshop, participants could bring their issues and questions regarding their own research projects. Moreover, a great dinner was held in one of Leiden’s oldest restaurants. The organizers feel that the workshop was a great success!

This workshop was funded by the European Union’s Horizon 2020 research and innovation program under the EJP RD COFUND-EJP N° 825575.

 
 
 
 
EJPRD
 

EJP RD ERN Research Training Workshops Funding Opportunity: Deadline extended!

The deadline for European Joint Programme on Rare Diseases  ERN Research Training Workshops funding opportunity has been extended to October 22nd. 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 of €25.000 (venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers, if envisaged). 

The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. 

 
 
 
 
 

Endo-ERN at ESPE 2021

We look back at a successful contribution of Endo-ERN during ESPE 2021. If you missed the Endo-ERN symposium with presentations of Michel Polak, Jérôme Bertherat and Martha Kirchhoff, you can revisit ESPE2021 and watch on-demand this session and others through the platform.

 
 
 
 
 
Faisal-Ahmed

ESPE 2021 Research Award

Our congratulations to Prof S. Faisal Ahmed. He has been awarded with the ESPE 2021 Research Award. This award recognises research achievements of outstanding quality in the fields of basic endocrine science or of clinical paediatric endocrinology.

 
 
 
 
 
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CPMS - Introducing Emily White

“Hi everyone, I am Emily and I am a new project manager with Endo-ERN and I will also be assisting at the Operational Helpdesk. I have just completed my masters in Health and Medical Psychology at Leiden University so I am very excited to be working with the European Reference Networks. I am here to assist you however I can - from logging in to CPMS to creating panels to finalizing outcomes, and everything else in between. Like Danielle before me, I can be contacted at the helpdesk email with any queries (cpmshelpdesk@endo.ern-net.eu).

I will also be working with the continuous monitoring initiative and it is already so encouraging to see the cutting edge work being done by our members and contributors. Online, or in the office, I look forward to working with you all!”

 
 
 
 
 
Giorgio Dal Maso

New ePAG MTG1 Adrenal

Welcome to our new Endo-ERN ePAG representative Giorgio Dal Maso, who has recently joined Main Thematic Group 1: Adrenal, representing ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale).

 
 
 
 
 

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