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\title{The role of civil society in disability data collection: Challenges at
EU and national level}



\author[1]{Dimitrios Skempes}%
\affil[1]{Dept. of Health Sciences \& Health Policy University of Lucerne, Lucerne, 6002}%


\vspace{-1em}



  
  \date{May 07, 2026}


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\begin{abstract}
The Work Forum on the implementation of the United Nations Convention on
the Rights of Persons with Disabilities met in Brussels on 29 April
2015. The Forum brought together representatives of those responsible
for implementing and monitoring the implementation of the UN Disability
Convention, both at European and national level; these are focal points,
coordination mechanisms and monitoring mechanisms. Civil society and
disabled people's organizations also actively participate in the Work
Forum. The Work Forum aimed at ensuring that the disability treaty is
fully implemented. It allowed to share experiences on its practical
implementation and monitoring and to promote solutions to common
challenges. It is organized by the European Commission and meets every
year since 2010. ~The implementation of the UN Convention is a shared
task: both the European Commission and the vast majority of its Member
States are parties to the disability rights treaty and they implement it
within their respective competences. Within the frame of the Forum, a
roundtable was organized with the theme: ``Improving synergies between
the EU and the national level in the implementation of the UN
Convention''. Discussants included~ the author, Lucian Agafitei from
Eurostat and~ Roberta Crialesi from the National Statistical Authority
of Italy (Istat). The following text summarizes the author's remarks and
contributions to this discussion, highlights challenges in data
collection on disability and advocates for a more active role of civil
society in policy surveillance and monitoring.%
\end{abstract}%



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