PREPARE: Continuous Monitoring 2025
As we approach the end of 2024, we also approach the next Continuous Monitoring exercise that will take place between January and February 2025.
Before the end of the year there are 2 key things every Endo-ERN member should check:
Is your e-REC up to date with all new patients recorded? e-Reporting of Rare Conditions (e-REC) (lumc.nl) Have you any other Endo-ERN activities to complete and be scored on? HCP Performance Member Advice – Endo-ERN
If you want support in any of this please contact our Endo-ERN project mailbox.
ENGAGED: Endo-ERN ePAG raising rare disease awareness
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.
REGISTER: European Reference Networks – a key EU infrastructure to partner for research activities, the why and the how
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 [...]
CALL: 2025 Joint Transnational Call for Proposals on Rare Disease Therapies
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 [...]
REGISTER: Upcoming Workshops Patient Rights and Rare Diseases in the European Union
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.
SAVE THE DATE: 16th European Paediatric Neurology Society Congress
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.
ABSTRACTS OPEN: European Paediatric Neurology Society
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.
CALL: Innovative Health Initative
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: APS1/APECED: A Treatable IFN-γ-opathy
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 [...]
