Read the February-March edition of the Endo-ERN newsletter now! It features a report on our third annual General Assembly, the first EndoRARE webinar, past meetings, and upcoming meetings! Pokračovat ve čtení
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. Pokračovat ve čtení
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. Pokračovat ve čtení
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. Pokračovat ve čtení
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. Pokračovat ve čtení
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 shrnutí
| Event | ESPE Science Symposium 2022 |
| Datum | 7 října - 8 říjnath, 2022 |
| Lokalita | Utrecht, the Netherlands |
| Webové stránky | Navštivte webovou stránku event |
| Registrace | Register 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 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 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 here: https://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
ECRD2022
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 shrnutí
| Event | ECRD2022 |
| Datum | 27 června - 1 červencest, 2022 |
| Organizace | EURORDIS |
| Webové stránky | Navštivte webovou stránku event |
| Registrace | Register for event |
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.
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 shrnutí
| Webinar | CPMS Training workshop |
| Datum | 8 dubnath, 2022 |
| Time | 10:00 – 12:00 hr |
| Registrace | Registrace je uzavřená |