Akcn pln realizace Nrodn protidrogov politiky na obdob

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Currently we are working within the activities of
the CZ EU Council PRES (eu2009.cz) on the Czech
National Strategy for Rare Diseases (2009-2019)
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The content of the CZ National Plan for Rare
Diseases is based on FR and BG plans. It takes
into account recommendations from Eurordis,
Orphanet and Europlan in which CZ has its
representatives
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EU Council Activities in the area of Rare
diseases I.
Examination of the Council Reccommendation
continues successfully after the EU Parliament
provided their comments Target June 9th
ratification at the EPSCO meeting of Ministers of
Health
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EU Council Activities in the area of Rare
diseases II.
Support for RDs from the EU CZ PRES at the
March 3rd Eurordis presentation of
the book The Voice of 12,000 Patients
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Rare Diseases and neonatal screening listening
to the opinion of patient support groups
http//www.eu2009.cz/scripts/modules/diary/action.
php?id3068
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CZ has participated in the Rapsody project via
SÚKL activities (workshop in March 2008)
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CZ international activities in the area of Rare
diseases
1/ Orphanet (www.orpha.net) CZ participates
activitely in the activities of this web portal
for RDs 2/ EuroGentest (www.eurogentest.org)
harmonisation and standardisation of genetic
testing in RDs 3/ ECORN (www.ecorn-cf.eu)
model E-health project pro patients with RD
cystic fibrosis 4/ EuroCareCF
(www.eurocarecf.eu) model project for complex
study of a RD cystic fibrosis 5/ ERNDIM
(www.erndim.unibas.ch) consortium for quality
assessment in biochemical genetics for RDs 6/
RAPSODY (Rare Disease Patient Solidarity -
http//www.rapsodyonline.eu/) mapping centres of
reference for RDs in CZ 7/ EUROPLAN
(www.europlanproject.eu) active participation in
creating guidelines for national plans for RDs
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Eurordis has provided useful information in
their book of the The Voice of 12,000 patients
on the situation in Europe and on positive /
negative examples with regards to RDs
Thank you for your kind attention !