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 [...]

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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.

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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.

 

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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.

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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 [...]

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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 [...]

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ACTION: ESPE Rare Disease Advisory Committee (RDAC)

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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ENDORSED: Giornate Endocrino-Metaboliche Milanesi (GEMM)

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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REGISTER: Care of adult patients with Klinefelter syndrome

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, 5 March, 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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NOW OPEN: Clinical Exchange Programme call for applications

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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