We are absolutely delighted that NI is participating in the European Rare Diseases Research Alliance (ERDERA), which formally starts September 2024 with an estimated budget of Euro 380 million 2024-2031.  The kick-off meeting is planned for 28th October 2024 & we look forward to helping improve the lives of people living with rare diseases across the UK and Europe.  More than 170 organisations are working together to advance prevention, diagnosis, and treatment research for rare diseases.

 

The European Union is expected to contribute around 150 million euros to this co-funded partnership via Horizon Europe, while the rest of the funding will come from members states, countries associated to Horizon Europe and in cash and in-kind contributions from public and private partners. The alliance takes over the co-fund EJPRD to bring under one roof all knowledge, resources and services, boost clinical research and spur innovation to make Europe a world leader in this field.  ERDERA will continue developing a robust and comprehensive data and expertise infrastructure and innovative clinical research services -with a focus on advanced therapies-, funding new research projects, providing training and expediting translation of findings into tangible solutions for patients. It will also ensure alignment on international and national rare diseases research strategies.

Iliana Ivanova, Commissioner for Innovation, Research, Culture, Education and Youth, said: “Millions of Europeans suffer from one of the rare diseases, but we lack a good understanding of their condition as well as preventive measures, diagnostics and treatments. This is where a common policy at EU level and pooled resources can make a huge difference. The new ERDERA partnership can harness the unique potential of Horizon Europe in changing people’s lives for the better. I wish it all success in its important work".

Daria Julkowska, ERDERA scientific coordinator, explained: “We have a tripartite mission: One; to bring under one roof a broad range of high-value services, resources and cross-disciplinary expertise to support rare disease research; Two, to boost clinical research by enabling every consenting patient living with a rare disease to be findable and enrolled in a suitable clinical study and finally, to spur innovation and EU competitiveness, through investment but also by aligning regional, national and European research strategies, and fostering collaboration among all stakeholders at a global scale”

Amy Jayne (AJ) McKnight, NI PI noted, "This project is another important step towards better prevention, diagnosis, understanding rare conditions, and improving treatments for people living and working with rare diseases.  NI are contributing to data infrastructure and data-driven research, clinical and translational research opportunities, training and education modules, generating new knowledge that translates into improved care, building capacity and empowering our rare disease community.

 

#BreakingDownBarriers #NoMoreSilos #MultiNational #CollaborativeResearch

ERDERA has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement N°101156595. https://erdera.org/

AJ McKnight

AJ McKnight, Centre for Public Health

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Please do contact our rare disease team by email for further information.