“The health of 30 million people living with a rare disease in Europe should not be left to luck or chance. Rare 2030 prepares a better future for people living with a rare disease in Europe with foresight.”
WHAT IS Rare 2030?
Rare 2030 is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. This a two year project that will end in a presentation to parliament at the end of 2020 with recommendations on the most critical areas needing sound policy. To keep updated with the process, follow us on social media or subscribe to our newsletter.
WHY IS Rare 2030 IMPORTANT?
Since the adoption of the Council Recommendation on European Action in the field of Rare Diseases in 2009, the European Union has fostered tremendous progress to improve the lives of people living with rare diseases. Rare 2030 will guide a reflection on rare disease policy in Europe through the next ten years and beyond.