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.

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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 [...]

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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. 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.

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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.

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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 [...]

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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.

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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