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A Moving New Parkinson's Disease Campaign Aims To Stamp Out Inequalities In Treatment And Care Across Europe
The European Parkinson's Disease Association (EPDA) urged European
decision makers and politicians to end inequalities in care and treatment
access for people with Parkinson's disease.
The plea was made during the launch of EPDA's latest campaign,
'Parkinson's is visible, make it livable', intended to visualise the daily
challenges faced by those with Parkinson's, increase people's knowledge and
understanding of the disease and influence decision makers.
EPDA's campaign follows new research* highlighting the extent to which
everyday activities are negatively impacted by Parkinson's. The research,
Real Life, Real PD, conducted by EPDA among 3,000 people living with the
disease, showed that eating, dressing, washing and speaking are some of the
daily tasks significantly affected and that the majority of people do not
feel in control of their symptoms. Almost half of all respondents described
how their depression and mood swings placed an added strain on relationships
with partners and families.
Speaking at the event, EPDA president Stephen Pickard commented,
"Parkinson's is a costly disease and places a huge burden on carers and
society as a whole. We need governments to realise that taking action to
reduce this burden by ensuring people receive the best care and treatment
available makes the most economic and social sense."
He continued, "There are nearly 1.2 million people living with
Parkinson's in Europe, and with an ageing population this figure is set to
rise. It's time to address inequalities in care and treatment of the disease
and improve the lives of those affected by Parkinson's now and in the
future."
The campaign was launched at the 12th Congress of the European Federation
of Neurological Societies (EFNS) in Madrid where delegates heard from EPDA
representatives and watched a series of emotive short films featuring people
with Parkinson's battling with everyday tasks such as shopping and crossing
the road.
The campaign, 'Parkinson's is visible, make it livable', is the first
step towards eradicating inequalities in care and treatment access across
Europe and a summit meeting is scheduled to take place in Brussels next year
where MEPs will discuss the practical steps required to improve management of
the disease.
Campaigner, Tom Isaacs (40), who has lived with Parkinson's disease for
12 years, commented at the event, "It always amazes me how Parkinson's is so
visible socially and yet seemingly invisible to society. This is a ruthless
condition and help is needed throughout Europe. This EPDA initiative is
crucial. We need to increase understanding. We need to raise the profile. We
need people not just to see, but to act."
To watch EPDA's short films and find out more about the campaign, please
follow this link: http://www.parkinsonsdecisionaid.eu.com/awarenessCampaign/2008/video.asp
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*The full research report has been submitted for publication to the
International Journal of Clinical Practice and is currently under review
Real Life Real PD Survey
The Real Life, Real PD Survey, a joint project between EPDA
and GlaxoSmithKline, was conducted in the following European countries:
Andorra, Armenia, Austria, Azerbaijan, Belgium, Bosnia, Bulgaria, Czech
Republic, Denmark, Estonia, Faeroe Islands, Finland, France, Georgia,
Germany, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Norway,
Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, Ukraine and
the UK
Close to 3,000 people across Europe participated in the
survey, to assess the real-life everyday concerns of people living with PD.
Of these 55 percent were male; 45 percent were female, and the average age
was 63 years. Over half of respondents had lived with PD for over 6 years.
Respondents were recruited via local (EPDA) member organisations in each
country. Own-language questionnaires were available to complete and submit
online via the EPDA website.
About EPDA
The European Parkinson's Disease Association (EPDA) is a non-religious,
non-political and non-profit making organisation concerned with the health
and welfare of people living with Parkinson's disease and their families and
carers.
Founded in June 1992 in Munich with a membership of nine European
Parkinson's patient organisations, the EPDA currently has a membership of 40
organisations across Europe (active members able to vote at the annual
General Assembly), see http://www.epda.eu.com/members.
EPDA aims to ease the lives of people with Parkinson's and their families
and carers by promoting a constructive dialogue between science and society,
and by encouraging and supporting the development of national PD
organisations.
European Parkinson's Disease Association
Mutarea Un nou boala Parkinson Campania urmãreºte sã ªtampila Out inegalitãþi în tratament ºi îngrijire În Europa - A Moving New Parkinson's Disease Campaign Aims To Stamp Out Inequalities In Treatment And Care Across Europe - articole medicale engleza - startsanatate