Description of the report
From 2012-2015, the ‘State of the Art’ Report was published annually, in 5 volumes, under the EUCERD Joint Action (past volumes are available here)
In 2016, the Resource on the State of the Art of Rare Disease Activities in Europe migrated to RD-ACTION.
The streamlined State of the Art Resource comprises the following components:
- An Overview Report (summarizing key European RD policy-related watersheds and documents; the status quo in Europe regarding national plans and strategies; highlights on transversal topics such as registries, genetic testing, research; summaries of the RD policy frameworks of non-European countries (based upon the OrphaNews newsletter; highlights of RD institutions such as Orphanet and EURORDIS; and more)
- Country-specific data relating to rare disease activities at the national level (including summaries, more detailed reports, and archived information) – Pages are updated as new data is received, with the next formal update in early 2018
- The full survey -showing the question maps and possible replies under each section and sub-section- is available here: Final State of the Art question bank
- Topic Summaries are being elaborated on issues including the following: the Status Quo of National Plans and Strategies for Rare Diseases in Europe; Newborn Screening; Centres of Expertise; and rare disease Registries. Once the last remaining countries have submitted their data (early 2018) a completed table of EUCERD Core Indicators for National Plans/Strategies will be published here