Multi-stakeholder initiative

Bringing ERNs, patients and industry together

Our aim is to find consensus on future models for collaboration for ERNs and industry, which can unlock solutions for people living with a rare disease in Europe

About Us
Get involved

Submit your examples of best practice for collaboration

We are continuing to gather case studies and examples of best practice for clinical research network and industry engagement, and would like to hear from you

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Our ambition

Future-proofing Europe’s rare disease ecosystem

With the first 5-year cycle of ERNs coming to an end, Together for Rare Diseases’ ambition is to ensure that R&D opportunities are fully exploited

Our Work

About Us

We are an agile multi-stakeholder initiative aimed at supporting European Reference Networks (ERNs) to collaborate with stakeholders to pursue opportunities that will address unmet medical needs of people living with rare diseases.

Our multi-stakeholder Steering Group brings together experts from across the EU to guide our work.

Our Aim

Unlocking opportunities

Our aim is to unlock opportunities for partnerships, particularly with the pharmaceutical industry, in areas such as:

Basic to translational research

Clinical trials for rare & ultra-rare conditions

Testing and accelerating innovative approaches to diagnosis

Development and implementation of data/evidence generation initiatives

Questions, or want to get involved?

Find out more about our work

Together4RD on Twitter

"When it comes to ERN and industry collaboration, it's unclear where that's allowed due to the current Board of Member States (BoMS) guidance.We need to work with the BoMS [..] to leverage the opportunity registries represent for early diagnosis"@VictorMaertens1 @EUCOPE #NRDS2023
17 April at 1:39pm
Hello from Stockholm πŸ‡ΈπŸ‡ͺ! Together4RD is at this year's Nordic Rare Disease Summit, where we will be talking at 13.05 about early diagnosis and the role of registries. Stay tuned for more updates - and if you're also attending, come and say hello πŸ‘‹
17 April at 7:43am
Victor Maertens, @EUCOPE's Government Affairs Director, added that sharing expertise and knowledge can accelerate the path towards innovation.
21 March at 3:31pm