EURORDIS leads new foresight study to establish future policy needs of rare disease community

EURORDIS is leading the new Rare 2030 Project - a participatory foresight study to reflect on the long-term future of people living with a rare disease in Europe. Through the project, partners will create recommendations on the policy priorities of the rare disease community for the next decade.

The project kicked off in Brussels earlier this year with a meeting of project partners, European Commission representatives and Members of the European Parliament instrumental to bringing this project to life, including Frédérique Ries (MEP, Belgium).

Rare 2030 has been created ten years after the adoption of the European Commission Communication on Rare Diseases in 2008 and the Council Recommendation on an Action in the Field of Rare Diseases in 2009. The EU has come a long way in fostering cooperation to improve the lives of people living with a rare disease since the adoption of these two cornerstone documents.

It has supported Member States in a number of actions including the development of national rare diseases plans, the establishment of the European Reference Networks, proper codification of rare diseases, and promotion of patient engagement, amongst many other key activities.

However, despite this encouraging progress, efforts still need to be made to meet the health needs and reduce health inequalities of the 30 million people living with a rare disease in Europe and their families.

“We had ambitious goals one decade ago,” recalls Yann Le Cam, Chief Executive Officer of EURORDIS, “So many of which were achieved. This coming decade should only inspire us to reach further, dream bigger. We have put in place the infrastructures needed, now we must push for measurable improvement in the quality of life and cures for people living with a rare disease.”

Would you like to get involved in Rare 2030 and shape the next 10 years of rare disease policy?

Register to take part in an interactive webinar (taking place 2 May, 12:00 – 13:30 CET) to learn more about the foresight study and how you can help shape these recommendations.

The webinar will also highlight the first in-person opportunity to get involved in Rare 2030 - a half-day workshop at the EURORDIS Membership Meeting Bucharest 2019 17 – 18 May (register to attend!), during which participants will brainstorm on factors that most influence the future of people living with a rare disease.

Moving towards Rare 2030

Anna Kole, Public Health Advisor at EURORDIS and Rare 2030 Project Lead explains, “Using innovative methods, EURORDIS and its partners will bring all stakeholders around the table in a bottom-up approach that, as always, keeps patients at the heart of decision making. A mix of qualitative tools and quantitative platforms such as the EURORDIS Rare Barometer Programme, will be used over the next two years to bring together the rare disease community’s expectations.”

With the guidance of the ISINNOVA team (experts in conducting foresight studies), project partners will consult a large Panel of Experts including patients, rare disease experts, advocates and society at large to construct a number of possible future policy scenarios around topics like national policies, data collection and sharing, access to treatments, basic, clinical and translational research, diagnosis, social integration and holistic care, patient engagement and access to health. The project will also be guided by a Research Advisory Boardincluding Europe’s highest expertise in foresight, health policy and innovation.

Ultimately, the project will bring forward a road map of sustainable policy recommendations for the 2020-2030 period that allows the rare disease community to convert their preferred scenarios into reality.

Rare 2030 is running simultaneously to the recently launched EURORDIS #Pledge4RD, which calls on returning or candidate MEPs running in the upcoming European parliamentary elections to pledge their support for a new political framework for rare diseases, with stronger collaboration at the European level and increased support for Member States, in particular in these three areas.

More information on the Rare 2030 Project: