The 5th EUROPLAN National Conference – the 3rd with EURORDIS – took place on 20 October 2017 in Budapest, Hungary. HUFERDIS – Rare Diseases Hungary was the organiser.

The conference provided an overview of the progresses made in the following issues as well as recommendations to continue fostering joint efforts in improving diagnosis and care:

  • Status of the Hungarian National Plan and European Reference Networks for Rare Diseases (RDs)
  • Implementation of Hungarian National Plan and the Centres of Expertise and Healthcare Pathways
  • Integration of RDs into Social and Family Policies, Early Intervention
  • RDs Communication/ Information and Education/ Training
  • Research on RDs
  • Definition, Codification and Inventorying of RDs
  • Orphan Medicinal Products

For each of the above themes, the report provides a comparative analysis on achievements made between the years 2010 – 2017 using the EUROPLAN* indicators, and the years 2013 – 2017 using the EUCERD* indicators.

*EUROPLAN Indicators: 59 indicators were developed within the EUROPLAN project 2008-2011 to monitor the implementation of national plan or strategy for rare diseases in EU countries.

EUCERD Indicators: the EU Committee of Experts on Rare Diseases (EUCERD – November 2009-June 2013) reviewed and synthesised the 59 EUROPLAN indicators to come up with 21 core indicators to be provided by EU countries when monitoring their national plan or strategy for rare diseases.

Read more: EUROPLAN Conference Report

State of the Art Report on Rare Diseases / Hungary: