Today, over 30 million EU citizens are affected by rare diseases. For many of them, living with a rare disease means a lack of answers. It means waiting too long for a diagnosis. And often it means there is no clear treatment plan.
Today, on World Rare Diseases Day, I would like to honour these persons and call for renewed energy and closer collaboration to improve research, diagnosis, treatment and quality of life.
The European Commission has strived to support this community of patients and health professionals for several years. We have to date authorised 170 medicines for the benefit of more than 6 million patients living with rare diseases, and we are supporting research through our European Joint Programme on rare diseases, which brings 130 institutions from 35 countries together.
Our 24 European Reference Networks are another concrete example of our support. This innovative, cross-border system connects experts from all over Europe and allows them to operate as one, pooling expertise, knowledge and resources, providing answers and hope to patients affected by rare diseases and their families.
Tackling rare diseases and reducing the inequalities in treatment across the EU is a key personal priority for me. Earlier this month, I launched an EU wide public consultation on Europe’s Beating Cancer Plan, which will have a concrete impact for the 22% of cancer patients that are diagnosed with a rare form of cancer, as well as for other rare conditions.
Today, I would like to take this opportunity to encourage the broadest collaboration possible in the field of rare diseases – this is key to better understand these diseases and make a difference for the many persons living with these conditions every day.”