Why a Panel of Experts?

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. Given this very broad focus, 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. The PoE involves 184 experts from 38 countries. To stimulate meaningful discussion on the status quo, needs, trends and drivers of change, the Panel was loosely sub-divided into 8 distinct -though interconnected- Sub-Groups.

Who is involved?

The table below shows the range of sub-groups operating under this PoE, and provides links to membership lists for each. The full membership list for the PoE is available here

What is a Knowledge-Base Summary?

To stimulate debate, a background document was prepared for each Sub-Group, known as a Knowledge-Base Summary. These may be accessed via the table below.

  • These are non-exhaustive summaries of relevant policies, initiatives, resources and actors involved in each broad area.
  • They should be viewed as dynamic documents - the table below will always link to the latest versions of each, and indicate when a new version is available
  • Where possible, the documents incorporate data from the Resource on the State of the Art of Rare Disease Activities in Europe, obtained from EU Member States to elucidate national approaches to a range of topics. This data is still being updated by some MS, and thus these sections of the Knowledge-Base Summaries will be updated in the coming weeks and months.
  • Each document ends with the results of a dedicated Literature review and links to both a select and extended bibliography (reflecting work performed by Rare2030 Partner INSERM).
  • The documents are outputs of Rare2030 WP4: their creation was overseen by UNEW, with the support of the Rare2030 partners

 

SUB-GROUP TOPIC MEMBERSHIP LIST KNOWLEDGE BASE SUMMARY (BACKGROUND DOCUMENT)
1. Political & strategic frameworks relevant to rare diseases Membership List Knowledge Base Summary for subgroup 1
2. Data Collection and Utilisation

 

 Membership List Knowledge Base Summary for subgroup 2
3. Availability and accessibility of Orphan Medical Products (OMPs) and medical devices Membership List Knowledge Base Summary for subgroup 3
4. Basic, Clinical, Translational and Social Research for Rare Diseases Membership List Knowledge Base Summary for subgroup 4
5. Diagnostics Membership List Knowledge Base Summary for subgroup 5
6. Integrated, Social and Holistic Care for People with Rare Diseases Membership List Knowledge Base Summary for subgroup 6
7. Rare Disease Patient Partnerships Membership List Knowledge Base Summary for subgroup 7
8. Access to Healthcare Membership List Knowledge Base Summary for subgroup 8

 

The ISINNOVA team has prepared a ‘FAQ’ document on Foresight Studies, available here. This document will be adapted across the project, to increase levels of understanding about the methodology and how the outputs of such studies are used by policy-makers