Rare 2030 Panel of Experts

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.

The Knowledge Base Summaries for all 8 topic sub-groups here (along with membership lists). These documents will be revising and refining in the coming months, as they are intended as dynamic resources to summarise some of the key issues, initiatives, resources and developments relevant to each topic.

The project is coordinated by Eurordis, for any question, please mail to rare2030@eurordis.org