At their final virtual conference on 23 February, the Rare 2030 project launched the final report of the project: “Recommendations from the Rare 2030 Panel of Experts: Strategic and action-oriented recommendations to guide the rare disease stakeholder community towards our preferred scenario”.
Stella Kyriakides, European Commissioner for Health and Food Safety, and Terkel Andersen, President of EURORDIS-Rare Diseases Europe, both gave talks and committed to keeping rare diseases, along with cancer, high on the political agenda. Even more exciting for the future, Olivier Véran, French Minister for Solidarity and Health, announced that both rare disease patients and the ERNs will be a political priority for France when it takes up EU Presidency from 1 January 2022 until 30 June 2022.
An interesting reflection was that, at beginning of the project, we were asked to think about possible “wild cards” i.e., events that could have a significant impact that would be hard to predict. And then the COVID-19 pandemic happened!
We strongly recommend that you read the recommendations as they are important for ERNs and all the associated future developments. One thing is very clear: patients with rare diseases are calling for social justice, equity and access to high quality healthcare and more research and collaboration. The ERNs are ready to help deliver this.