Several Endo-ERN members are ambassadors for rare disease at the European Society for Paediatric Endocrinology Rare Disease Advisory Committee. They recently sent a letter to Endo-ERN outlining their priorities and planned activities:
Review the current activities of ESPE (committee by committee) in the field of rare diseases and identify opportunities for development among ESPE committees, as well as other organizations involved in the field of rare diseases
Provide recommendations to the ESPE Council on the following:
Fostering collaborations with all ERNs, including Endo-ERN and ERN-BOND Focusing on opportunities for knowledge exchange in Europe, as well as beyond Europe, which would [...]
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Endo-ERN has endorsed an upcoming meeting 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.
You can find the full agenda and information about how to register here.
Topics tracks cover:
Pituitary gland Neuroendocrine-adrenal tumors Thyroid Gonads Calcium-phosphorus metabolism LIpids Obesity and lipodystrophies: physiopathology and therapy Type 1 diabetes Type 2 diabetes
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One of the aims of Endo-ERN is to share the expert across the network and beyond. We are fortunate that our members are very active and sharing their expertise.
We are delighted that Claus Gravholt, Aarhus University Hospital will share his expertise about Care of Adult Patients with Klinefelter syndrome Wednesday, 22 January, 2025 at 1600-1700. There will be opportunity to ask questions during the webinar. This event will be chaired by Hedi Claahsen, Radboud University Nijmegen Medical Center, Nijmegen, Netherlands
The genomics of Klinefelter syndrome is currently being unraveled and this may well mean that clinical care will change [...]
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The second call for applications for the Endo-ERN Clincial Exchange Programme is now open! Early application is encouraged with the call closing on 30 November, 2024 for exchanges in 2025.
The ERN Clinical Exchange Programme has been designed to share knowledge, strengthen the clinical capacities across the network and to stimulate collaboration between healthcare professionals in European Reference Networks (ERNs) and beyond. The mission of Endo-ERN is to reduce present inequalities in rare disease care for patients with rare endocrine conditions.
Find out about the criteria, potential hosts and apply now.
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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.
An application for accreditation has been submitted to European Accreditation Council for Continuing Medical Education (EACCME).
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