maria puiu pre zen tare puiu final
TRANSCRIPT
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Romania: research inrare diseases
totghether and for
patients
Maria Puiu,
Mihai Gafencu,Dorica Dan,
Margit Serban
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Who decides what medical
research is done?Some genetic research can
bring benefits to health, but
is genetic research always
conducted in the public
interest?
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In recent years, rarediseases have become a
priority and a major
concern of the EuropeanParliament.
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It became increasingly obvious that these
patients need support from European
community.
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All the national single efforts in this field
are not sufficient and those diseases are
so rare, there we need centers andexperts in each European State.
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I
n Romania, the growinginterest of thegovermental healthsystem is due to theR
are Disease PatientsAssociations effort inthe last 5 years (RPWAthen RoNaRD).
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But their efforts have to be completed by
medicals community.
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In this context, a group of Romanian
professionals have initiated the research
project
Corelation of clinic, genetic and epigenetic
aspects implicated in the etiology of
Prader Willi/Angelman syndroms: model of
multidisciplinary abordation for rarediseaseas in Romania.
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The project is remarcable because of the
development of an efficient cooperation
and partnership among important
institutions formedical education,
universities, research institution and
patient organisation (RPWA) in order to
solve some problems related to diagnostic,complex treatment and prevention in RD.
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1. will enssure a better connection with European research
projects2. will contribute to:
- optimization of the investigation methods
- a more efficient public health care sistem, with a major
economic and social impact through shortening theperiod for a propergenetic diagnose and hospitalisation,
reducing the costs and increasing their chances for
integration into community.
The new interdisciplinary and pluridisciplinaryapproach of RD research in Romanian :
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Through this project a CDI network with
expertise in RD will be established, at EU
standards, improving the capacity for
education and research.
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Our project promotes a new model of
partnersip among researchers and
patients and will prove, at national level,
the efficiency of the network approach in
RD and cooperation for both, patient
interest and research.
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Our
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There are more to be done...- Health policy
- Money
- Human resources
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Acknowledgements
The Prader Willi AssociationsEURORDIS, IPWSO, Inovation Norway,
MH Romania
The international experts
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Together
Thank you!