Endo-ERN ePAG Lexi Breen was recently a speaker at the British Association of Gender Identity Specialists (BAGIS) on the topic of Gender Incongruence in Intersex Variations. The involvement of ePAGs at larger congress programmes is to be welcomed. Endo-ERN is fortunate to have experienced ePAGs like Lexi that are able to bring the patient experience and insight to these types of audiences.
Interested in partnering with ERNs for research? This informative webinar on Monday, 2 December 17:00-17:45 will provide a comprehensive overview of ERNs’ core mission within the European healthcare landscape, detailing the resources, expertise, and infrastructure ERNs offer, and illustrating how collaborations between ERNs and the private sector can accelerate rare disease research and drug development, benefiting both industry goals and public health outcomes.
Check out the full programme and register now. This webinar is organised by Together4RD and the European Rare Disease Research Coordination and Support Action [...]
The European Rare Diseases Research Alliance (ERDERA) is excited to announce the upcoming launch of its Joint Transnational Call (JTC) for Proposals 2025. Set to officially open on December 10, 2024, this call will invite research teams from across Europe and beyond to submit collaborative projects focused on “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”.
This JTC will build upon the significant progress made by previous European Joint Programme on Rare Diseases (EJP RD) calls, with the aim of fostering international partnerships to develop innovative therapies for rare diseases. National and regional [...]
The European Commission is hosting workshops in several countries with a focus on patient rights in cross-border healthcare and European Reference Networks. Registration is now open for the joint Belgium/Netherlands workshop taking place 19 November 1000-1700 (CET) Brussels, Belgium.
Upcoming other events
3 February 2025 Oradea covering Romania-Hungary
28 February, 2025 Strasbourg
Contact DG Sante for more information.
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 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 [...]
Register now for this webinar featuring a presentation from Prof Michail Lionakis of the National Institutes of Health(NIH), Bethesda, Maryland, USA.
The webinar is planned for Monday, 21 October, 1530-1630.
This talk will address APS1/APECED, the monogenic syndrome caused by AIRE deficiency that features impaired central immune tolerance. The talk will outline key findings of a ~10 year prospective clinical and research evaluation of ~200 APS1/APECED patients at the NIH Clinical Center in the United States. These findings led to better understanding the broader spectrum of its clinical manifestations, redefining its diagnostic criteria, and gaining novel mechanistic [...]
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 [...]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
