As 2013 draws to a close, EU countries are busy formulating, adopting, implementing, or renewing their strategies for providing care and services to rare disease patients as urged via the Council Recommendation of 8 June 2009 on an action in the field of rare diseases.
On 22 November 2013, the United Kingdom Department of Health released the UK Strategy for Rare Diseases, targeting
five key areas: Empowering those affected by rare diseases; Identifying
and preventing rare diseases; Diagnosis and early intervention;
Coordination of care; and Research. The strategy presents a blueprint
allowing the four UK countries (England, Scotland, Wales, and Northern
Ireland) to create and harmonise their plans, which are due to be
published at the end of February 2014. In parallel with the launch of
the UK Rare Diseases Strategy, a Rare Diseases Translational Research
Collaboration (TRC) is being established in the UK, with a four-year
investment of £20 million.
In the Netherlands, the Ministry of Health adopted the final version of the Dutch National Plan for Rare Diseases on 10 October 2013. Stakeholders gathered in mid-November for a EUROPLAN National Conference appropriately entitled “And Now?”,
featuring results-oriented workshops on areas of the Dutch plan that
require further clarification, as well as existing bottlenecks. The
event focused on the main areas of the national plan, including:
Implementation; European cooperation; Diagnosis and research; Quality of
life; Strengthening the patients’ voice; Centres of Expertise; and
Access to medicines.
The European Project for Rare Diseases National
Plans Development (EUROPLAN), through the EUCERD Joint Action, helps
countries define their rare disease priorities and undertake the process
of elaborating a national strategy involving all relevant stakeholders.
The EURORDIS National Rare Disease Policy website section and the EUROPLAN website
contain documents - including content guidelines, national conference
details, consultation results, concept papers, draft strategies, and
published plans - from over two-thirds of the 28 EU Member States in
response to the Council Recommendation, and more are expected in coming
months. The European Commission is due to issue a report in early 2014
on the status of the implementation of the Council Recommendation based
on a survey of EU Member States.
“It is too soon to assess the quality of the
policy measures and actions taken through the national rare disease
plans as well as to have an informed opinion on the robustness of the
budgetary approach embedded into these plans for their full impact and
sustainability. However, we can already praise the overall dynamic which
is real and well-coordinated across Europe. We are moving toward an
integrated EU-national strategy, comprehensive from research to care,
focused on a few essential building blocks such as information, centres
of expertise, registries, and access to medicines,” declares Yann Le
Cam, Chief Executive of EURORDIS and Vice-Chair of the EU Committee of
Experts on Rare Diseases. “In coming years, the Committee of Experts on
Rare Diseases, involving all EU Member States and observer countries,
will play a leading role hand-in-hand with the European Commission to
pursue efforts in the right direction. And EURORDIS will be vigilant and
supportive to make sure future developments address patients’ and
families’ needs.”
One welcome bonus of the European Union call and
momentum to develop national strategies on rare diseases is that its
message has spread beyond the European Union with countries in Europe
such as Georgia, Norway, Serbia and Russia, and countries around the
world such as Australia, Brazil, and Canada, drafting strategies
responding to the needs of their people living with a rare disease.
For more information, you can also refer to the most recent version (July 2013) of the excellent annual EUCERD Reports on the State of the Art of Rare Diseases Activities in Europe.
Louise Taylor, Communications and Development Writer, EURORDIS
Source
http://www.eurordis.org/
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