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May 2020

The Rare2030 Foresight Study – building a better future for people living with a rare disease


Rare2030 event discussion

The Rare2030 Foresight Study continues! After one year of reflection and with a nearly 200 person strong Panel of Experts, the study has reached its third phase.

Led by EURORDIS with nine project partners and initiated with the support of the European Commission and European Parliament, the Rare2030 Foresight Study is laying the foundations for policies that will create a better future for people living with a rare disease in Europe.

 

A participatory process with the input of 200+ experts

The Rare2030 Foresight Study involves hundreds of people from 38 countries working towards one single mission – to build future rare disease policies that will improve the lives of people living with a rare disease in Europe.
The final recommendations of Rare2030 will be based on a unique, participatory consultation process involving people from various backgrounds and ages.

The nearly 200 members of the Rare2030 Panel of Experts (patient advocates, policy makers, researchers, young advocates, industry representatives, regulators, among others) represent the broad scope of areas relevant to rare diseases, including diagnostics, treatment, care and social support.  

Rare2030 is also guided by a Research Advisory Board, made up of nine esteemed experts who ensure the Foresight Study encompasses the input of all relevant stakeholders.

New Rare2030 tools

Rare2030 is a participative study with four stages, three of which are now complete. The tools developed in these first three stages are now available via the Rare2030 website:

  1. A knowledge base of summaries on eight topics such as data collection and utilisation, availability and accessibility of orphan medicines and medical devices, diagnostics, and access to healthcare.
  2. An analysis and prioritisation of trends and drivers of change that will shape the future of rare disease policy.
  3. Based on the predicted influence of these trends, the creation of four future policy scenarios (watch the new scenarios video!) depicting life for people living with a rare disease in and beyond 2030.

Next steps in the Rare2030 Foresight Study

Discussions at last week’s European Conference on Rare Diseases & Orphan Products (which took place exclusively online) built on the work already carried out through Rare2030. Participants at ECRD 2020 voted on which of these scenarios they believe will be best for people living with a rare disease.  

To guarantee Rare2030 integrates the input of all generations, Rare2030 will also hold a Youth Citizens Conference in July. This event will bring together a selection of young and motivated citizens from 12 European countries.
In addition, in the months to come, several regional meetings will take place in cooperation with national rare disease alliances to collect input on local policy priorities. 

Based on all this input, the Rare2030 Panel of Experts will translate the scenarios into recommendations for policy makers on how to build future rare disease policies.

These recommendations will be presented at an event at the European Parliament in February 2021.

The health of the 30 million people living with a rare disease in Europe should not be left to luck or chance. Great progress has been made in the past 20 years, but without vigilance and constant effort, this can easily be reversed.At a pivotal moment in history, Europe can continue to set an example for other regions throughout the coming decade.
Questions regarding the Rare2030 Foresight study? Please contact anna.kole@eurordis.org.  


Eva Bearryman, Communications Manager, EURORDIS