Endo-ERN Newsletter April-May 2022 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
April-May 2022



It was great to meet colleagues and friends, new and existing, at the European Conference for Endocrinology 2022 in Milan!

We are proud to offer our congratulations to our ERN Coordinator Prof Alberto Pereira who received the Clinical Endocrinology Trust Award and lectured on “Setting the scene for (rare) endocrine diseases in Europe”.


SC/AB meeting

group picture  

Our steering committee and advisory board met once more to discuss the work and progress of the network, including the restructuring of the core Work Packages (under the new EU4Health program). Our formal gathering continued into the evening as we all enjoyed an excellent meal together at Osteria Serafina. We also got to say a hearty welcome to our newest team members, ePAG, Diana Kwast, and also a hearty farewell to Johan Beun, who has served diligently since 2017 as an ePAG for MTG1. Thank you for your hard work and dedication!


ECE booth

Booth 1  

We were of course glad to see many of you stopping by our joint Endo-ERN, EuRRECA, ERICA & EURR-Bone booth at ECE 2022! It was great to see some of our new members make the effort to see us alongside the many interested visitors we received who were curious about our network. Our coordination team were ready and waiting each day to answer questions and assist our existing members with issues they encountered. If you missed the chance to see our booth at ECE, please check out some of our photos and posts from Milan. And of course, mark down the date for ESPE 2022 (Sept. 15th-17th)  to meet us once again!


Joint ESE/Endo-ERN Symposium

  Olaf 2

The topic of rare endocrine diseases was discussed throughout the conference and addressed by many of our representatives during their presentations. In particular, our speakers during our Joint ESE/Endo-ERN Symposium who spoke on the following and were presided over by Prof. Anna Nordenström and Prof. Olaf Dekkers:

“Roadmap of Endo-ERN – reflection of the first 5 years” by Prof. Dr. Olaf Hiort, Germany Co-Speaker: MD, PhD Alberto M Pereira

“Highlights of the ESE Rare disease committee” by Prof. Dr. Simona Glasberg, Israel

“Joint guideline activities of ESE and EndoERN – Scientific perspective and patient expectations” by Prof. Dr. Anna Nordenström, Sweden

“Rare diabetes – benefit of EndoERN” by Dr. Felix Reschke, Germany


1st Endo-ERN clinical practice guideline

We are proud to announce that the 1st Endo-ERN clinical practice guideline about Pubertal induction and transition to adult sex hormone replacement in patients with congenital pituitary or gonadal reproductive hormone deficiency has been published in European Journal of Endocrinology.


A joint webinar from ESE, Endo-ERN and ESPE

28 June 2022, 16:30 - 18:00 CEST

Join us for the first joint rare disease webinar from ESE, Endo-ERN and ESPE discussing:

Essential insights for the transition from paediatric to adulthood care in rare pituitary disorders

Chairs: Violeta Iotova (Bulgaria), Nienke Biermasz (Netherlands) and Evangelia Charmandari (Greece)

The session will follow the programme below:

  • Introduction from the Chairs
  • Mapping of the current transition of care for patients with pituitary disease at Endo-ERN Reference Centers - Dr Savi Shiskov (Bulgaria)
  • Presentation of a use case illustrating unmet needs from the patient perspective.    Patient/parent representative
  • Discussion and proposal for next steps

The webinar will be open-access, please register using the link below.


Kallmann syndrome Patient information

The website has been updated with new patient information materials about the rare disease: Kallmann syndrome 

You will find here:


Mini-survey of the Dutch Pituitary Foundation

The Dutch Pituitary Foundation, the Wilhelmina Children’s Hospital and the Princess Máxima Center in Utrecht in collaboration with European Reference Network for Rare Endocrine Conditions (Endo-ERN) are collecting the opinions and experiences of patients (and/or carers) living with the consequences of hypothalamic dysfunction, or problems in the pituitary/hypothalamus area after treatment for a tumour in the hypothalamic/pituitary region.


Achondroplasia survey

With the purpose of understanding better the pathophysiology and management of spinal pathology in achondroplasia, the ICCBH Achondroplasia spinal working group has designed a survey for health care professionals caring for patients with this condition. The results will be presented at the Achondroplasia Spinal Workshop that will be held on July 2 in Dublin as part of the ICCBH meeting.

We invite all health care professionals who see patients with achondroplasia to complete the survey before June 24. Please share the survey with others who might be interested

Diana Kwast

New ePAG MTG1 Adrenal

Welcome to our new Endo-ERN ePAG representative Diana Kwast-Hoekstra, who has recently joined Main Thematic Group 1: Adrenal, representing Dutch Adrenal Society NVACP and she will take over from Johan Beun.


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.

ERN logo_Exchange Programme 2021-2022

ERN Clinical Exchange Programme

We are pleased to announce that the ERN Clinical Exchange Programme has been restarted. Endo-ERN still has several packages available. Exchanges are also possible between member HCPs of different ERNs. In case of interest to serve as a host institute or to travel to a host center, please apply via this link below. Exchanges should take place in 2022, so please don’t wait to send in your application, or just send an email to the Endo-ERN Coordinating Office.


EJP RD / ERN Workshop


On May 4th, the EJP RD / ERN Workshop entitled "Endocrine cancer: a challenge in adults and children” took place in Gliwice, Poland. The workshop, funded with an EJP RD (WP17) grant for ERN workshops, was organised by Prof. Barbara Jarzab of M. Sklodowska-Curie National Research Institute, full member HCP of Endo-ERN. Aim was to present a coherent view of research progress among endocrinologists and oncologists, dealing with both adult patients and children with rare endocrine tumors.

We particularly wish to highlight Professor Steven Waguespack's excellent summary of these issues in his lecture "Papillary thyroid cancer in children and adults – is it the same disease?". This lecture, together with Thera Links's talk" How to realize in the everyday practice a principle of de-escalation of DTC treatment?" formed a wonderful whole. The workshop was concluded with a clinical lecture by Professor Birute Zilaitiene from Lithuania, who discussed the management of endocrine carcinoma in pregnancy. The workshop was attended by 40 participants and was scored as very satisfying.


Pituitary Update Course 12-14 October 2022, Tallinn, Estonia

Save the date! 

We will meet in Tallinn, Estonia, for the first time to get an excellent update on pituitary diseases. Please mark down the 12th - the 14th of October and join us!  The speakers best in the field from Europe will share practical and most up to date knowledge. Please submit any cases around pituitary and of note, the best will be awarded!


ERICA Newsletter Spring 2022


ERICA 2nd General Assembly, 20-22 June 2022, Bologna, Italy


All ERICA beneficiaries, ERN representatives, Expert Group members, Advisors and partners will gather to a face-to-face symposium to discuss the progress and future of the ERN related Research activities and to participate in plenary sessions and through participation in the WP-Specific Expert Working Group sessions.


ERICA new matchmaking tool for ERN Research proposals: The Inter-ERN Research Wall

ERICA aims to promote collaborative inter- ERNs research projects. It is therefore crucial to have a centralised location to announce any new project and search for collaborators. A specific web page has been created for this purpose on the ERICA website Research Wall

It provides basic information about the open calls for collaboration as well as contact details of the project PI. Please note that only inter- ERNs collaborative projects will be advertised via this research wall.

The new projects will be regularly announced in the ERICA newsletters and on Twitter.  Additionally, if you wish to receive updates directly by email, we kindly ask you to REGISTER HERE


Recording Endo-ERN webinar

The recording of following webinar is now available for viewing at your own convenience.


Vacancy: PhD in neuroscience/physiopathology with a 3 years funding


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