Pituitary Update Course 2022

The workshop “Estonian Pituitary Update Course” will takes place in Tallinn (Estonia) from October 12 to October 14, 2022 and has speaker presentations from various Endo-ERN expert members from 3 different countries.

The workshop will cover the latest updates on acromegaly, Cushing’s disease, non-functioning pituitary adenomas, but also cancer effects on pituitary glands and much more! This update course is a joint course held by the European Society of Endocrinology (ESE) and Endo-ERN. The Estonian Endocrine Society will be the local host. All participants are encouraged to submit a case around pituitary diseases. It can be classical or something that you’d love an expert view on. Also, the organisation appreciate cases that provide a learning opportunity! Please submit cases, this is the best way to have active learning workshops. The best cases will be awarded. Olvasson tovább

Second annual conference Idiopathic Ketotic Hypoglycemia

The Second annual conference Idiopathic Ketotic Hypoglycemia will take place on June 11 and June 12, 2022. The annual conference will be fully virtual to make sure everyone has a chance to join, no matter where in the world they live. All of the presentations will be available after the conference for educational purposes.

The goal of the conference is to unite the families affected by idiopathic ketotic hypoglycemia, the experts, the healthcare professionals, and the industry so we together can take the first step towards an enhanced understanding of idiopathic ketotic hypoglycemia. Olvasson tovább

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. Olvasson tovább

Endo-ERN webinar: New growth treatments for Achondroplasia

On Tuesday May 10th at 16:00 – 17:00 CET an Endo-ERN webinar about “New growth treatments for Achondroplasia” will be given by Klaus Mohnike, Jean Pierre Salles and patient representative Patrica Carl.

Achondroplasia is the most common form of disproportionate dwarfism. The rare skeletal dysplasia leads to an adult height of ~130cm. Historically, Achondroplasia is not an ENDO-topic with experts coming from various fields. However, due to new treatment options, there is an overlap because prescriptions and surveillance will be primarily done by endocrinologists. Two medical experts and a patient representative will summarize the current situation and upcoming treatment options. Olvasson tovább

ESPE Science Symposium 2022

The ESPE Science Symposium 2022 on “Hypothalamic Dysfunction in Childhood; Understanding its etiology and developing new ways to improve outcome of children with genetic or acquired causes of hypothalamic dysfunction” will be held on 7-8 October 2022 at the Princess Maxima Center, Utrecht, the Netherlands.

There will be discussions about the etiology of genetic and acquired hypothalamic dysfunction in childhood, its consequences and new ways of management to improve outcome. In addition, the focus will be on building new networks and collaboration within ESPE and Europe, together with the patient organizations and Endo-ERN.

For young clinicians and scientists : The ESPE Science Symposium offers a maximum of 25 free places for young clinicians and scientists defined as those who are less than 8 years (full-time equivalent) since completion of doctorate training. Participants who would like to receive one of these free places are required to apply.

For more information please visit their website

Event összegzés

EventESPE Science Symposium 2022
Dátumoktóber 7. - október 8th, 2022
HelyszínUtrecht, the Netherlands
WeboldalLátogassa meg a event weboldalt
RegisztrációRegister for event


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 DrosophilaC. 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 to cardiologists, molecular biologists, post-docs, medical fellows, and PhD students and who are employees of or affiliated to an ERN Full Member or affiliated Partner institution.

The training workshop is free of charge and consists of interactive presentations and discussions.

Registration closes on May 1st, and those selected to participate from among the applicants will be informed by May 9th of their selection.

More information and registration herehttps://www.ejprarediseases.org/event/ejp-rd-ern-workshop-functional-exploration-of-genetic-variants-in-cardiac-diseases/

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, 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.

Application, organiser’s profile, and more



The 11th edition of the European Conference on Rare Diseases & Orphan products will take place fully online from 27 June to 1 July 2022.

Event összegzés

Dátumjúnius 27. - július 1st, 2022
WeboldalLátogassa meg a event weboldalt
RegisztrációRegister for event


CPMS Training workshop

For all of our new and existing members, we are holding a CPMS training workshop on Friday 8th of April from 10:00-12:00 CET.

This online workshop will cover the following topics:

  • How to register your members: step by step
  • Walkthrough of the system:
    • Dashboard
    • Basic navigation
    • Personal settings
  • Where to find guidance/ resources for specific tasks
  • Questions & any specific queries

Webinar összegzés

WebinarCPMS Training workshop
Dátumáprilis 8th, 2022
Time10:00 – 12:00 hr
RegisztrációRegisztráció lezárva