ADVOCACY

Rare2030

The Rare2030 Panel of Experts (nearly 200 key opinion leaders in rare disease policy) met in person for the first time in Brussels on November 7th to discuss trends in rare disease diagnostics, treatment, care and social support and how they may lead to future policy scenarios. Rebecca Tvedt Skarberg (ePAG in ERN BOND suggested by OIFE) is one of the members of the Rare 2030 Panel of Experts. Unfortunately nobody from the OIFE could attend the workshop, but Céu Barreiros attended the Council of Federations-meeting the day after.

Member of the European Parliament Frédérique Ries, who has championed the importance of the Rare2030 foresight study from the start, also participated in the meeting and highlighted that the analysis being carried out through Rare2030 is already playing a key role in policy making. Watch a recording of the conference.

If you would like to contribute your ideas on the future of rare disease policy please visit www.rare2030.eu or email rare2030@eurordis.org.