European Partnership Opens a New Era in Rare Disease Research
The European Rare Diseases Research Alliance (ERDERA) kicks off this September, with an estimated budget of 380 million euros and the aim of
improving the lives of 30 million rare disease patients in Europe and beyond.
The new partnership, championed by the European Union under
Horizon Europe and Members States, is led by the National Institute of Health and
Medical Research –
INSERM (France). It integrates over 170 organisations from the public and private sectors to advance prevention, diagnosis and treatment
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Loren van der Hoeven, MD and PhD candidate at Amsterdam UMC was invited by Endo-ERN ePAG Johan de Graaf of the Dutch Pituitary Foundation to write an article for patients explaining rare disease registries.
This easy-to-understand article was published in the membership magazine of the Dutch Pituitary Foundation and Endo-ERN was allowed to translate to English and share with the network.
Check out the article and please share with patients that might be interested.
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REGISTER for this upcoming webinar.
The webinar will specifically focus on the management of gonads, hormone replacement therapy and long-term bone and sexual health in women with CAIS.
MTG7 chair Claus Gravholt, Aarhus University Hospital, Denmark will chair.
Clinical case presentation, Alessandra Mangone, University of Milan
Long-term outcomes in CAIS, Prof Giovanna Mantovani, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan
Learning outcomes: After attending the webinar attendees will be able, with the benefit of a case study as well as a presentation, manage the gonads, hormone replacement therapy and long-term bone health of women [...]
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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
9 October Warsaw, Poland register now
Upcoming other events
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 register for this webinar.
Speaker: Anita Hokken-Koelega, MD, PhD, Erasmus University Medical Center, Rotterdam, The Netherlands & President of European Society for Paediatric Endocrinology (ESPE)
Chaired by Charlotte Höybye, Karolinska University Hospital, Sweden & Susan O’Connell, Children’s Health Ireland, Ireland
Learning outcome: After attending the webinar attendees will be able to use the relevant tools to identify small for gestational age (SGA) patients, understand the appropriate treatment protocols and possible impacts during the child’s development.
Accreditation statement
Update SGA, GH treatment beyond childhood webinar, 2025-02-10, Netherlands has been accredited by the European Accreditation Council [...]
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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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