Maria Puiu Pre Zen Tare Puiu Final

8/8/2019 Maria Puiu Pre Zen Tare Puiu Final

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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!

Maria Puiu Pre Zen Tare Puiu Final

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