Rare 2030 Foresight Study

Rare2030 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 a better future for people living with a rare disease in Europe.

  1. Scope of the project
  2. Why is this project important for the rare disease community?
  3. Role of EURORDIS
  4. News
  5. More information about the project
 

Scope of the project

Rare2030 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 a better future for people living with a rare disease in Europe. The project will guide a reflection on rare disease policy in Europe through the next ten years and beyond.

  • Date: 2018 to 2030
  • Website: www.rare2030.eu
  • Partners: Newcastle University, ERN BOND (Istituto Ortopedico Rizzoli), EURORDIS-Rare Diseases Europe, METAB ERN (University Hospital of Udine), Fondazione Telethon, Orphanet, Imperial College London, ISINNOVA
  • EURORDIS contact: Anna Kole, Public Health Policy Advisor - Rare2030 Project Lead, anna.kole@eurordis.org

Why is this project important for the rare disease community?

Rare2030 prepares a better future for people living with a rare disease in Europe by using foresight. Foresight is a tool that provides us with different future scenarios and sets out road maps for how we can reach them through changes in policies and strategies so to better shape the future of the rare disease community. The health of 30 million people living with a rare disease in Europe should not be left to luck or chance.

Role of EURORDIS

EURORDIS is leading Rare2030 and is in charge of the strategic/scientific coordination of the project.

EURORDIS’ role:

  • Leader of the Consortium
  • Leader of work package 1 ‘Coordination’, with the support of ISINNOVA as Project Manager (PM): legal and financial management, including reports and organisation of meetings; scientific soordination, including risk mitigation & data protection and ethics monitoring;
  • Leader of work package 2 ‘Dissemination & Sustained Community Involvement’: development and implementation of communication plan and materials; co-organisation of European ‘consensus conference’ to present, discuss and review results, engaging society to shape and take ownership of the outcomes; test functionalities/opportunities of the EU Health Policy Platform as a sustainability tool;
  • Involved in: work package 4 ‘Knowledge Base’ to contribute to the knowledge base and mapping of determinants; work package 5 ‘Scenarios and Modelling’ to present the scenarios, discuss and review results, engaging society to shape and take ownership of the outcomes; and work package 6 ‘Policy Recommendations’.

News

More information about the project

4 main steps of Rare2030

  1. Knowledge base
    1. Establish a knowledge base by critically review existing knowledge and emerging issues through a literature review.
  2. Horizon scanning and scenario building
    1. Identify the major trends and drivers that may shape the future of rare disease policy.
    2. Identify a number of explorative future scenarios in which certain trends are more or less prioritized “What if….?”
  3. Back-casting and refining scenarios
    1. Vote on which are preferred and identify the normative policy options to get there “How do we get there by 2030?”
  4. Policy recommendations
    1. Translate the scenarios into policy recommendations that reflect all stakeholders needs via national meetings

 

This project is co-funded by the European Union
The Rare2030 project is co-funded by the European Union Pilot Projects and Preparatory Actions Programme (2014- 2020).

 

The information contained in this publication does not necessarily reflect the official position of the European Commission.

Page created: 19/08/2019
Page last updated: 23/09/2019
 
 
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