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
Upcoming other events
9 October Warsaw
19 November Brussels covering Belgium-Netherlands
3 February 2025 Oradea covering Romania-Hungary
28 February, 2025 Strasbourg
Contact DG Sante for more information.
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We are excited to announce that the 9th Endo-ERN General Assembly is scheduled for Friday May 9, from 13:30 to 19:00 and Saturday May 10, from 08:30 to 12:00 in Copenhagen, Denmark. It will take place at the same location as the Joint Congress of ESPE and ESE 2025 10-13 May 2025.
Please save the date!
We are currently finalizing the details regarding the agenda, and registration process. A formal invitation with complete information will be sent to you as soon as possible.
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Please save the date for this webinar. Speakers and topics confirmed in due course. Register now and you will be updated.
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The 62nd Annual European Society for Paediatric Endocrinology (ESPE) will take place 16-18 November in Liverpool, England.
The Endo-ERN project office will attend and host a booth and a symposium. If your institution is a member and you are attending ESPE please complete this survey.
Endo-ERN symposium Sunday, 17 November 1430-1600
Location: Hall 3
Chaired by Olaf Hiort, Universitätsklinikum Schleswig-Holstein, Lubeck, Germany
Future of Registers for Rare Disease: the example e-REC, Erica van den Akker, Erasmus MC Children’s Hospital, Rotterdam, the Netherlands
Genetic testing in DSD or rare forms of adrenal insufficiency– what is the relevance [...]
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The Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN) project has put out their first Bullet Point Newsletter. JARDIN is a huge and complex project that is met with very high expectations from EC and members. Check it out!
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The Cross-Border Access to Paediatric Clinical Trials Working Group (WG) created by the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) is collecting data. The aim of this WG is to facilitate the inclusion of children and young people in clinical trials across Europe avoiding any language barriers. Recently we have identified that some patients could not take part in a clinical trial because they do not speak the official language of the country where the trial is performed or English.
Enpr-EMA is currently collecting data from Clinical Research Units and, also from parents of children living [...]
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EURORDIS recently published the results of their full Rare Barometer survey which can be found here. The key findings are available in multiple languages.
Key findings include:
4.7 years for a confirmed diagnosis 40% have NOT been referred to a Centre of Expertise 25% had 8 consultations or more with healthcare professionals before their diagnosis was confirmed
EURORDIS also provided a breakdown of the responses related to rare endocrine conditions.
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Just published Bardet-Biedl syndrome improved diagnosis criteria and management: Inter European Reference Networks consensus statement and recommendations .
Four European Reference Networks (ERN-EYE, ERKNet, Endo-ERN, ERN-ITHACA) have teamed up to establish a consensus statement and recommendations for Bardet-Biedl syndrome (BBS) providing guidance for the relevant experts.
“This consensus statement also emphasizes on initial diagnosis, monitoring and lifelong follow-up, and symptomatic care that can be provided to patients and family members according to the involved care professionals.”
The guideline is relevant for Endo-ERN MTGs 3, 5, 6.
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Register now for this upcoming Endo-ERN webinar.
Genetic obesity is associated with difficulties in the regulation of appetite and satiety, often resulting in behavioural difficulties around food and consequent severe obesity. GLP-1 agonists affect appetite and satiety and may benefit these patients. In this webinar, the role of GLP-1 agonists in genetic obesity conditions such as Bardet Biedl, Alström and Prader-Willi syndromes will be discussed, and the impact of behaviour on the patient and carers will be explored.
Chaired by MTG5 Chairs Charlotte Höybye, Adult chair, Karolinska University Hospital, Sweden & Susan O’Connell, Paediatric chair, Children’s Health [...]
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Register now for this upcoming webinar organised by Endo-ERN’s MTG3.
An application has been made to the UEMS EACCME® for CME accreditation of this event.
Wednesday 9 October at 16:00-17:00 CEST
SWEET: the role of a worldwide registry to investigate rare diabetes
Chaired by: Felix Reschke, Hannoversche Kinderheilanstalt, Diabetes Center for Children and Adolescents, Hannover, Germany
Speaker:
Thomas Danne, Nova Medical School, Lisboa, Portugal & Breakthrough T1D, New York
After attending the webinar attendees will have a greater understanding of the SWEET registry and specialist network and the work that they do. This is a [...]
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