Remarks via Video message by Commissioner Stella Kyriakides at the 12th European Conference on Rare Diseases & Orphan Products

European Conference on Rare Diseases

Ladies and gentlemen,

Up to 36 million people across Europe are living with a rare disease.

Behind this number are patients, families and journeys.

The EU shares EURODIS's overarching goal for rare diseases: to improve patient access to diagnosis, treatment and care – and we are taking concrete steps to achieve it.

Today, 24 European Reference Networks for Rare Diseases are connecting doctors, patients and specialised healthcare providers across Europe – providing answers where before there were none.

The networks have received €77 million in EU funding to consolidate their work over the next four years.

The Joint Action JARDIN with Member States, Norway and Ukraine – with a budget of over €18 million – aims to integrate the European Reference Networks into national health systems.

We are also preparing a new Partnership on Rare Diseases under the Horizon Europe Programme -- to advance much-needed research and innovation.

Europe's Beating Cancer Plan shines a spotlight on paediatric cancer treatment and care through a specific flagship initiative and complements the actions implemented by the European Reference Network for paediatric cancer.

We are also one step closer to the European Health Data Space becoming a reality.

Rare disease patients will have access to and control of their health data wherever they are in Europe -- and researchers on rare diseases will benefit massively from a plethora of data from across Europe.

In terms of medicines for rare diseases, our goal is clear: nobody can be left behind.

People suffering from rare diseases must have access to the best, most innovative treatments, no matter where they live and no matter their disease.

We are addressing these issues with our pharmaceutical reform, currently under inter-institutional negotiation.

Crucially, the reform reinforces the role of the patients' organisations in shaping better EU policies on rare diseases – so that patients are always at the very centre of our efforts.

Dear friends,

In the field of rare diseases, collaboration is the key to success.

Patient voices are essential – and that is why today's conference, and EURODIS's strong voice and advocacy over the last 25 years, is so very important.

This is the largest patient-led, rare disease policy-shaping event in Europe – and we are listening carefully to what you have to say.

Together, we can deliver a brighter future for patients living with rare diseases.