May-Nov 2020 - Regional Conferences aligned with upcoming EU presidencies

The Rare 2030 Regional Conferences are the opportunity to highlight with key stakeholders how the trends apply to regional contexts, to debate which scenarios should be focused on or favored and to reflect on how policies may help shape a sustainable future for people living with a rare disease in your country. Participants of the Regional Conferences are asked to review and adapt key trends at regional level, to identify explorative future scenarios taking into account country/region specific needs and relevant stakeholders’ experience/expertise, and ultimately to identify normative policy options to reach these scenarios. These meetings will take place in France, Sweden, Spain, Czech Republic, Croatia, and Germany.


Feb 2021 - Policy Conference @Parliament 

On the occasion of the Rare Disease Week 2021, a series of advocacy event, held online, this event will be the culmination of our two-year study and we will present our recommendations on February 23rd.

Public registration coming soon!


28 Oct 2020 - Online Young Citizen Conference Fall Debate

Following the Young Citizen Conference that took place in July, young citizens presented their work and policy recommendations to a selected panel of experts.


26 Oct 2020 - ERN Plenary Event

This event is the culmination of 4 parallel Sessions of discussions by ERN coordinators, patient advocates and hospital managers on the future of ERNS in the context of the Rare 2030 Foresight study to shape future policy.

See the event agenda.


Sept - Oct 2020 - EU level Backcasting workshop

EU Level Backcasting Workshops: ERN coordinators, HCPs, patient advocates (ePAGs) and key representatives of European consortia and institutions discuss the policies around the future of ERNs as a key component of the Rare 2030 project recommendations. A staggered series of online brainstorming workshops addressed the following topics:

Sept 21st: Governance and strategic positioning of ERNs

Sept 28th : Integrating ERNs to national systems and framework

Sept 29th: Role of ERNs in virtual care delivery and cross-boarder healthcare

Oct 12th: ERNs, research, and the data ecosystem of the future

Outputs of these workshops were presented in a final plenary conference where participants including key decision makers were provided opportunities to ask questions and provide feedback.


7 - 8 July 2020 - Young Citizen Conference

As part of the Rare2030 project we seek to engage citizens interested in the field of rare diseases in the policy debate through a series of meetings, conferences and capacity building opportunities to prepare them to provide their opinion on the future of rare disease policy. A meeting will be organised with experts and involved young citizens –bridging the gap between the next generation public, experts and politicians to contribute to and validate a series of future policy scenarios at the 2030 horizon of rare disease policy.


14 - 15 May 2020 - ONLINE - The Rare Disease Patient Journey in 2030 – European Conference on Rare Diseases and Orphan Drugs

The European Conference on Rare Diseases and Orphan Drugs (ECRD) served as an opportunity to evaluate the plausibility and consistency of proposed scenarios and fine-tune the scenarios description to different territorial contexts. Sessions throughout the ECRD presented the possible future scenarios in rare disease policy and opened a debate on the policy options needed to get there.



7 Nov 2019, Brussels - Panel of Experts Workshop – Validation of Trends and Drivers and Building of Scenario Space

Hundreds of stakeholders comprising the Rare 2030 Panel of Experts will convene to validate the trends and drivers identified, ranked and prioritized throughout the year. These trends will serve a more interaction portion of the workshop where participants will begin to define possible future trends based on the trends and drivers that are prioritized. Download conference agenda here. Watch the livestream
Read the conference report



18 May 2019, Bucharest, Romania - Knowledge Base Workshop – EURORDIS Membership Meeting

Members of EURORDIS will gather to share their vision for the future of rare disease policy in this interactive workshop. Patients will brainstorm the factors that most influence their future as people living with rare diseases in small groups and prioritize them together. The outputs of this workshop will contribute to the overall knowledge base and horizon scanning stages of the the foresight study.



Part one

  • Frédérique Ries, Member of European Parliament
  • Yann Le Cam, EURORDIS-Rare Diseases Europe
  • Rüdiger Krech, WHO Health Systems and Innovation (video)

Part two

Research Advisory Board Panel Discussion: Global insights 
  • Moderated by Andrea Ricci, ISINNOVA
  • Robert Madelin, FIPRA, former Director DG CONNECT and DG SANTE
  • Terkel Andersen, EURORDIS-Rare Diseases Europe Board of Directors
  • Milan Macek, Dept of Biology and Medical Genetics, Charles University Orphanet Czech Republic

Part three

Presentation of Methods of Trends
  • Victoria Hedley, University of Newcastle Institute of Genomic Medicine
  • Giovanna Giuffrè, ISINNOVA