The 16th Congress of the European Peadiatric Neurology Society (EPNS) offers classification of the event as follows: A for Acute, B for Brain, Health & Science and C for Chronic. We invited you to be part of this unique ABC format to learn, teach, meet, network and exchange ideas on an international stage. Learn more about the stimulating programme and SUBMIT your ABSTRACT. Deadline for abstract submission 15 January 2025.
The Innovative Health Initiative Joint Undertaking (IHI JU) aims to enable the cross-sectional integration of technologies, know-how, products, services and workflows for people-centred healthcare. Download the Strategic Research and Innovation Agenda.
The IHI will pilot novel, applicant-driven approach to next call proposals. Key dates:
10 October: Online info session on the call and brokerage platform and event – recording
Mid October: Publication of the draft call text
12-13 November: Face-to-face brokerage event in Brussels, Belgium
14 November: Online meeting rooms made available via brokerage platform for [...]
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 diseasesProvide 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 [...]
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.
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
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.
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.
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!
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 [...]
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 confirmedEURORDIS also provided a breakdown of the responses related to rare endocrine conditions.
