The Journal is a page for all member related news. Come here for real-time updates about ongoing member activities such as the Continuous Monitoring (CM), CPMS and other resources. Bookmark or add to your favorites and check back soon!
Monday, 12 May
The Endo-ERN GA was held last Friday afternoon with MTG sessions on Saturday just before the Joint Congress of ESPE and ESE. Slides are available for Day 1 and Day 2
Wednesday, April 30
Our colleagues in WP7 are developing an endorsement strategy for consensus statements, clinical practice guidelines, and scientific meetings. They are very interested to have your views and opinions and have created a SHORT survey on this topic.
Tuesday, April 8
Consider making a contribution to the CaPaB survey and help the ESE develop a programme that addresses unmet needs experienced. ESE Rare Calcium Phosphate and Bone disorders (ESE Rare – CaPaB) Survey
EURORDIS Rare Barometer results now available.
Monday, 31 March
Minutes for MTG2 are now available online.
Monday, 24 February
The Endo-ERN Steering Committee/Advisory Board (SC/AB) meeting presentations and minutes are now available online.
Thursday, 30 January
FAQ for Continuous Monitoring has been updated for the 2025 exercise.
The publication submission form is now also up and running.
Wednesday, 29 January
CPMS 2.0 is now live! Please check out the overview for information about login, permission&consent, and manuals& guides.
Tuesday, 14 January
The European Partnership for Personalised Medicine is currently running a survey on Unmet needs in personalised medicine managment and the potential of personalised health technologies in healthcare professionals. The input of as many healthcare professionals and patients as possible is highly appreciated. Survey link with more information.
The European Commission is hosting workshops in several countries with a focus on patient rights in cross-border healthcare and European Reference Networks. The next workshop is upcoming on February 5 focused on Hungary/Romania. Registation information now available.
Monday, 13 January
The Endo-ERN Transition of Care Working Group invites you to the complete a survey related to current practices, challenges and opportunities in managing the transition of care. Find out more information and complete the survey.
Tuesday, 7 January
The 2025 Joint Translational Call from the European Rare Diseases Research Alliance (ERDERA) is now open. You can find more information including key dates and links to resources here.
Tuesday, 12 December
Did you participate in the 5-year evaluation last year? Check out the report delivered by the EU about the state of the ERN community. You can download now.
Wednesday, 13 November
Are you ready for Continuous Monitoring 2025? Check out this article with some preparation tips for a smooth process in 2025.
Wednesday, 30 October
The European Commission is hosting workshops in several countries with a focus on patients’ rights in cross-border healthcare and European Reference Networks. The next workshop will be held Tuesday, 19 November Brussels, Belgium. You can register to attend in-person or online. Other national workshops upcoming:
2 February, 2025 Strasbourg
TBD February 2025 Oradea covering Romania-Hungary
Contact DG Sante for more information.
Monday, 14 October
Are you a primary or substitute contact for your reference centre (RC)? You should’ve received a link to a survey from EuRREB registries (EuRRECa and EuRR-Bone). Patient registries are key in rare disease research, and knowing more about the characteristics of your centre will help provide a better understanding of the data gathered in the registries. This survey is addressed to Endo-ERN/ERN BOND representatives. If your centre has both a paediatric and adult representative each of you will receive a request to complete the survey. This survey will take you approximately 15 minutes to complete.
Wednesday, 9 October
Letter to Endo-ERN from ESPE Rare Disease Advisory Committee is published on the website. Check out the priorities and process by reading the full letter.
Endorsed Event: Giornate Endocrino-Metaboliche Milanesi (GEMM) which was organised by Endo-ERN members IRCCS Istituto Auxologico Italiano, Fondazione IRCCS Policlinico, Milan; San Raffaele Hospital which will take place in Italy 14-15 November, 2024.
Tuesday, 1 October
Good news! The Endo-ERN Clinical Exchange Programme is now open for applications for 2025. Check out the criteria and get your application in by 30 November.
Wednesday, September 4
The European Commission is hosting workshops in several countries with a focus on patient rights in cross-border healthcare and European Reference Networks. There are 2 workshops in September and registration is now open:
17 September, Athens covering Cyprus-Greece register now
26 September, Valga/Valka covering Estonia-Latvia register now
Monday, August 26
Mark your calendar and save the date for the 9th Endo-ERN Assembly which is scheduled for Friday, 9 May from 1330-1900 and Saturday 10 May from 0830-1200 in Copenhagen, Denmark. It will take place at the same location as the Joint Congress of ESPE and ESE 2025 10-13 May, 2025.
Wednesday, August 21
Have you seen the new Bardet-Biedl syndrome guideline? Check it out here.
Monday, August 19
The Cross-Border Access to Paediatric Clinical Trials Working Group (WG) is currently collecting data. The aim of this WG is to facilitate the inclusion of children and young people in clinical trials across Europe avoiding language barriers. Please support this initiative by completing the survey.
Wednesday, August 14
New webinar alert! Register now using the link below.
December 6: Management of genetic obesity and food seeking behaviour e.d. in BBS/Alström/Prader Willi syndromes/ use of GLP-1 agonists in these conditions
Tuesday, August 13
Check out the results of the EURORDIS Rare Barometer including dedicated data about rare endocrine conditions.
Monday, August 5
HCP Performance System
Each HCP primary and substitute representative was sent their 2023 report today. Please review your report and submit any comments or corrections by 30 August to Emily White. You may find scoring information and member advice helpful as you review the report. More information about the HCP Performance System is available.
Monday, July 22
New webinar alert! Register now using the link below.
October 9: WEBINAR: SWEET-the role of a worldwide registry to investigate rare diabetes – Endo-ERN
Tuesday, July 16
NEW: Clinical practice guidelines for the care of girls and women with Turner syndrome: Proceedings from the 2023 Aarhus International Turner Syndrome Meeting were recently published.
Monday, July 15
Out now! Bullet Point Newsletter from the Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN).
Wednesday, July 10
Are you engaged in delivering virtual consultations using CPMS? There will be a new version available for Endo-ERN members later this year. Find out more about the upcoming changes.
Monday, July 8
Call all researchers the ERICA GA & ERN Research Conference is upcoming 11-13 December in Udine, Italy. Check out the call for abstracts and registration information HERE.
Thursday, July 4
There are currently 2 webinars planned after summer. Register now!
September 24: MTG2: Fibrious Dysplasia with emphasis on hypophosphatemia
September 25: MTG7: Turner syndrome and fertility options
Wednesday, June 5
You are invited to participate in a two-year project to develop a new European Society of Endocrinology (ESE) position statement: Self-management and support services for patients with Adrenal Insufficiency (AI). Find our more information here.
Thursday, May 30
The European Commission is hosting workshops in several countries with a focus on patients’ rights in cross-border healthcare and European Reference Networks. The next workshop will be held Monday, 17 June in Dublin, Ireland. You can register to attend in-person or online. The registration deadline is June 7. Other national workshops upcoming:
19 September Athens
26 September Valga/Valka covering Estonia-Latvia
9 October Warsaw
19 November Brussels covering Belgium-Netherlands
2 February, 2025 Strasbourg
TBD February 2025 Oradea covering Romania-Hungary
Contact DG Sante for more information.
Tuesday, May 28
Would you like Endo-ERN to disseminate a survey for you? We can do it! Check out the info here and a list of previous surveys for info.
Thursday, May 23
EURORDIS has created an Open Letter to the European Commission outlining crucial steps for rare disease to be taken following next month’s European Action Plan for Rare Diseases that bridges diverse policy areas and streamlines existing efforts with clear, measurable objectives. Find the letter here and consider signing individually and/or as a representative of your instituition.
Monday, May 13
Handbook of ENDOCRINOLOGY and METABOLISM
The first European endocrinology textbook developed by the members of Endo-ERN is now available. For students and residents find out more including a discount code.
Wednesday, May 1
The ERN Clinical Exchange Programme is now open for applications. Applications will be accepted until July 1, 2024. Find out about the criteria and consider applying now.
Friday, April 26
The presentations from the Endo-ERN General Assembly are now available.
Monday, March 25
The agenda for the upcoming SC/AB meeting is now available.
Monday, March 18
Our colleagues in ERN-EYE have made a fun interactive game to test and train doctors on how to deliver a rare disease diagnosis. You may might like to share this link with the junior colleagues in your department as a learning tool.
