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THE VOICE FOR PARKINSON'S IN EUROPE

EPDAUPDATE

JUNE 2013  ●  www.epda.eu.com

WELCOME

Welcome to the summer EPDA Update. We know many of our members will be getting ready to close down for the summer holidays – so we thought we'd get in touch before you do to share some of our latest news. As you'll discover, the last nine months have seen a number of 'firsts' for the EPDA – the first ever European Unity Walk for Parkinson's as well as the first STRONG and Regional Project meetings. We are proud to say that each project has been more successful than we'd hoped, and we are sure you'll be interested to learn more about them. But it's not just about us – we would also love to hear what you're doing in your respective organisations and countries. So don't be shy – get in touch and tell us what you're doing and we'll be sure to promote it either on our website, our flagship publication or via our social media platforms. We look forward to hearing from you. Have a great summer!

READ ALL ABOUT IT!
     
General Assembly

DON'T FORGET TO REGISTER!

Please remember to register for the EPDA's annual General Assembly, Learning in Partnership workshops and annual business meeting before you and your organisation close down for the summer. The inclusive and essential events will be held at the Sheraton Warsaw Hotel in Poland from 20 to 22 September. You can register and learn more about the weekend's exciting programme here

Regional Project

EPDA REGIONAL PROJECT OFF TO SUCCESSFUL START

The first ever EPDA Regional Project has resulted in an exciting development: a number of Nordic Parkinson's patient organisations have agreed to work together – along with the treatment industry – on an exciting joint project that aims to recruit more young people with Parkinson's to their respective organisations.

The Regional Project is a new EPDA initiative that aims to develop more regular links between its members that share language and cultural similarities. This first meeting – held in Helsinki, Finland, at the end of May – featured representatives from Parkinsonforeningen (Denmark), Parkinsonfelagiõ (the Faroe Islands), Suomen Parkinson-liitto ry (Finland), Norges Parkinsonforbund (Norway) and ParkinsonFörbundet (Sweden). Iceland's Parkinsonsamtökin á Íslandi was also due to be represented but had to cancel at the last minute.

Also in attendance were representatives from treatment companies AbbVie, GlaxoSmithKline, Medtronic, Orion and UCB.

Members agreed to return to their respective countries to do some preliminary research into how their joint initiative should develop. A further steering meeting was arranged for later in the year. More details about the Regional Project will appear in the next issue of EPDA Plus, which is due out in September.

"The EPDA felt the meeting was a significant success – this sort of real collaboration is very exciting for the region. These Nordic Parkinson's organisations have not involved the treatment industry in their annual council meeting before, and the positive communication that took place in Helsinki bodes well for the future."
Knut-Johan Onarheim, EPDA president

 

"It is the first step of something exciting."
Magne Fredriksen, Norges Parkinsonforbund secretary general

Unity Walks Unity Walks Working with Social Media

UNITY WALK DATE CONFIRMED!

The EPDA cordially invites each and every one of you to a truly special event... the second European Unity Walk will be held on Saturday 20 September 2014 in Luxembourg – and we'd love to see you there! Last year, the first ever European Unity Walk took place in Amsterdam, the Netherlands, and more than 1,000 people lent their support to what was a fantastic day of awareness raising, fun and friendship. Next year promises to be just as special – but it will only be so if we can rely on the support of our members and friends and partners. It will take place in between our General Assembly Learning in Partnership workshop day (19 September) and the day before our annual business meeting (21 September). So please put the date in your diaries straight away and keep an eye out for updates that will begin appearing across our dedicated website, and our social media and print platforms very soon! If you have any questions in the meantime, email info@epda.eu.com. We look forward to seeing you there!

EPDA CAMPAIGN STILL FULL OF LIFE

The third and final Life with Parkinson's booklet has recently been translated into Hungarian and Swedish. This takes the total number of languages for the booklet – entitled Accurate Diagnosis, Treatment and Care – into six (the other translated versions are Czech, English, Greek and Spanish). The book is also currently being translated into Slovenian. If you would like any copies of the Life with Parkinson's series, please contact vicky@epda.eu.com. Click here for more information about the Life with Parkinson's awareness campaign.

JOIN OUR MEP WORKSHOP

In little more than one year, the EPDA's MEP Support Network has grown to more than 70 members from the European Parliament. Most recently, Austrian MEP Heinz Becker joined, taking the total number to 71. To help our members work more with their parliamentarians and policymakers, our political affairs and policy officer Heather Clarke will lead a workshop – entitled ‘Demystifying political affairs and policy’ – at the annual General Assembly in September. Delegates will be able to discuss areas that interest them as well as take part in one-on-one discussions at a special ‘advice’ session after the workshop.

STRONG Medikidz Win a Kindle!

STRONG GETS STRONGER

The EPDA has confirmed that the second STRONG meeting will take place in Austria in September, with the third meeting following in Israel next March. STRONG aims to provide support to our member organisations. The first meeting was held in Barcelona, Spain, in March. There, a number of Spanish Parkinson's patient organisations met the EPDA along with neurologists and members of the treatment industry to develop a partnership project that aims to influence national decision makers to provide all people with Parkinson's in Spain access to the right treatment at the right time. This project is currently under development and further news about the project's outcomes will be available in the coming months. For more information about STRONG, click here.

DO YOU WANT TO HELP PD RESEARCH?

Would you like to know more about clinical trials and research about Parkinson's? Would you be interested in participating in an important trial that involves neurosurgery? If your answer to those two questions is ‘yes’ then we urge you to get involved in the EU-funded NRT project. NRT aims to introduce a novel therapy into clinical practice based on a well-founded understanding of patients' needs and the ethical and commercial issues related to the launch of new regenerative therapies in Parkinson's. The EPDA is an official project partner in this project, and the first of three meetings is taking place in Oxford Town Hall on 3 July. Two more meetings will be held in Sweden and Germany later this year. For more information about the NRT project, click here

OUR RESEARCH RESULTS ARE IN

The majority of our members generously took part in our ambitious 'communications project' earlier this year, which aimed at exploring and enhancing our relationship with our members. From January to March, our communications officer Tom Owen spoke directly to 31 of our members – asking them to answer honestly a number of questions about how they viewed the EPDA and what their organisations' priorities were. The answers were extremely interesting and are helping to shape the EPDA's future strategic direction.  "The research has been invaluable to all of us at the EPDA," says EPDA president Knut-Johan Onarheim. "We believe we are moving closer than ever to our members thanks to this research, and we're very excited about what sorts of partnerships will develop in the coming months and years." Don't miss the results from the research, which will appear in the September issue of EPDA Plus.

EPDA ON THE MOVE

The EPDA is set to submit a report that outlines the results of the final part of our Move for Change campaign to the European Journal of Neurology (EJoN) this summer. It is anticipated that the report will be published later this year. The results from the first two parts of the campaign have already been published in the leading peer-reviewed publication. The reports – authored by distinguished Parkinson's neurologists Fabrizio Stocchi and Bastiaan Bloem – reveal areas where progress has been made to ensure the best possible care for people with Parkinson's (PwPs) but also highlights the areas where much more work is needed. The third part – which asks to what extent PwPs receive access to support services – completes the data collection campaign. Once published, the EPDA will use the data (and the various published reports) from all three parts of the campaign and repackage it into country-specific reports that our members can use at a national level – in conjunction with their respective decision makers and healthcare professionals – to effect positive change for PwPs.

Move for Change

This is a special mailing for European Parkinson's Disease Association (EPDA) members, associated parties and sponsoring bodies. If you have received this email in error or would like to be removed from future mailings, please contact the EPDA. We apologise for any unintended intrusion.
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