4 STAGES OF FORESIGHT
WHO WAS CONSULTED IN THE RARE 2030 FORESIGHT STUDY
A CENTRAL CONSULTATIVE BODY:
THE RARE 2030 PANEL OF EXPERTS
As the Rare2030 project seeks to identify future policy priorities and needs across the field of diagnostics, treatment, care and social support for people with rare diseases it was important to establish a similarly broad Panel of Experts (PoE), uniting a range of stakeholders with knowledge and expertise across different aspects of the field. This group of experts comprised one of the main consultative bodies of the project.
PoE involved 200 experts from 38 countries. To stimulate meaningful discussion on the status quo, needs, trends and drivers of change in rare disease policy, the Panel was sub-divided into 8 distinct -though interconnected- working groups across the 8 recommendations in this report. Through a series of teleconferences and workshops these experts were consulted on the four stages of the foresight process.
AN ACADEMY OF ADVISORS:
The Rare 2030 Research Advisory Board
The Rare 2030 Research Advisory Board represents one panel of key opinion leaders involved in the Rare 2030 Foresight Study. It is composed of high level experts in the field of rare diseases, in health and research policy in general, emerging technologies and foresight studies - complementing the governance of the project.
A PLAN FOR EUROPE SUPPORTED BY ITS MEMBER STATES:
RARE 2030 REGIONAL CONFERENCES
Four Rare 2030 Regional Conferences were oragnised to provide key stakeholders at the national level consider how the trends identified by Rare 2030 Panel of Experts apply to the regional context, 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 the country of interest. Attendees included: representatives
of National Alliances, Orphanet, Ministries of Health, local healthcare professionals involved in ERN, Young Citizens and other stakeholders considered as relevant based on the specific national context.
To do so, participants of the Regional Conferences were 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 key recommendations at the national and European levels.
+ Croatia – November 24 online
+ France (including participants from Belgium and Luxembourg) – December 3 online
+ Spain – December 4 online
+ Italy – December 1 and 9 online
A PLAN FIT FOR THE NEXT GENERATION:
RARE 2030’S YOUNG CITIZENS
If policies are to be fit for the next decade they need to take into account the views and ambition of Europe’s Young Citizens. The Rare 2030 Foresight study brought together 23 Young Citizens from across Europe to give the voice of the next generation: those currently training to be the doctors, researchers, health advocates, policy makers who will be following the policies in their work, and those young people already living with, or caring for someone with a rare disease. Based on the future they want to live in, they put forward their recommendations driven by the following four values:
With a move towards more nationalistic policies across Europe, Young Citizens want to stress the need and value of collaboration in rare diseases, across borders, sectors and disease areas
To make real strives forward, Young Citizens want the community to make more of data and technological advances, and drive innovation in research
+ Person-centered care
Looking beyond the physiological symptoms of a rare disease was an absolute priority for Young Citizens, with a focus on integrated support for mental health
+ Education and training
For a cross-cutting understanding of what it means to live with a rare disease, and for a greater understanding by all healthcare professionals.