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THE VOICE FOR PARKINSON'S IN EUROPE

EPDAUPDATE
JULY 2012  ●  www.epda.eu.com
European Unity Walk

JOIN US IN AMSTERDAM!

Welcome to the last EPDA Update before the EPDA's momentous European Unity Walk takes place in Amsterdam on Friday 28 September – an event that aims to raise awareness across Europe about Parkinson's and its impact on people living with the disease, their families and our entire society.

There is still time for you to join us as we embark on the 1.6-kilometre procession that will bring together hundreds of our friends and supporters from across Europe.

 READ ALL ABOUT IT!

The level of support we have received so far has been wonderful – more than 300 people from nearly 20 countries have registered so far – and there is still two months to go until the big day.

Messages of good luck, support and excitement are coming in from all corners of the Parkinson's world – from EPDA member organisations, European policymakers, healthcare professionals, the treatment industry and patient organisations – all of whom recognise that this event is simply not to be missed if you've any sort of interest in raising awareness about the disease.

We strongly urge you to keep up to date with all the latest news about the European Unity Walk via our dedicated website's official news page, which will be updated on a weekly basis from now on. The website itself is packed with essential information about the event and all the on-the-day activities. (Please note: all registered participants will receive a special European Unity Walk T-shirt free of charge before the event begins.)

We are extremely grateful to all our supporters and hugely proud to call them our friends – not least Parkinson Vereniging, the Dutch Parkinson's organisation, which has partnered the EPDA in the walk's organisation every step of the way. Yet it's still vital that each of you play your part in spreading the word about the European Unity Walk further so that it reaches new people. Please tell your friends and tell your colleagues. Encourage them to join us so we can all move together for people with Parkinson's.

If you haven't registered yet, you can do so here. Have a wonderful summer break and we look forward to seeing you in September!

     

EPDA NEWS
EPDA General Assembly

REGISTRATION TIME!

Don't forget to register for the EPDA's 20th Anniversary Conference and Annual General Assembly, which will take place on the Saturday and Sunday following the European Unity Walk. The events will be held at the Grand Hotel Krasnapolsky, Amsterdam, on 29 and 30 September respectively. The conference will feature a series of presentations (in the morning) and workshops (in the afternoon) that revolve around the EPDA's The European Parkinson's Disease Standards of Care Consensus Statement in order to encourage national Parkinson's organisations to lobby policymakers to improve standards of care for people with Parkinson's in their countries. Registration closes on 15 September, so please register as soon as you can. Go to www.epda.eu.com/conference-and-ga for more information.
Move for Change Survey Parkinson's awareness campaign EPDA Pledge for Parkinson's

HELP US
CHANGE LIVES

It's now July, which means we've only three months left of the EPDA's Move for Change online campaign. If you're a person with Parkinson's (PwP) or a carer, the EPDA urges you to take the time to complete the third and final online questionnaire that determines whether PwPs receive continuous care and take part in managing their illness – two key rights agreed in the EPDA's 1997 Charter for People with Parkinson's. "The more responses we get, the greater weight the data will carry with European policymakers. Please encourage as many people as possible to help us effect change," said EPDA president Knut-Johan Onarheim. "EPDA members – national Parkinson's organisations – are requested to promote this important campaign with their members as much as they can. When we help each other, we become a much more powerful force." Click here for more information.

MAKING LIFE
WORTH LIVING

The EPDA is launching the third and final part of its Life with Parkinson's awareness campaign at its 20th anniversary conference in Amsterdam on 29 September. The final part of the campaign features a striking booklet that addresses the necessity of an accurate diagnosis for people with Parkinson's and the importance of the right treatment for the right person at the right time. The booklet, originally in English, will be available at the conference and via the EPDA website in Czech, Greek and Spanish, with additional translations being made available via the website in the coming months. More information about the campaign can be found here.

SIGN OUR
PLEDGE

The EPDA urges each and every one of you to sign its Pledge for Parkinson's – a four-point 'call to action' that outlines how MEPs and other policymakers can work towards improving conditions for people with Parkinson's. The Pledge was launched in the European Parliament on World Parkinson's Disease Day on 11 April and was signed by nearly 50 MEPs – a great indication that European policymakers are becoming more aware of the need to place a greater political emphasis on Parkinson's. However, the Pledge is open to anyone and everyone to sign and your support is vital in ensuring its momentum continues to grow. Signing up to the Pledge takes a few seconds and can be done here. If you've already signed the Pledge, we thank you very much and request you continue to spread the word as far as you can.

Parkinson’s through digital media

 

A DIGITAL PARTNERSHIP

The EPDA is partnering with treatment company Lundbeck in a project that aims to create value for people with Parkinson's (PwPs) through the use of digital media. The project will uncover the potential as well as the challenges of digital media, and will seek to generate and maximise the true value of the internet for PwPs and their families. The project requires six PwPs (up to 65 years old) and six of their close relatives – however, for the first phase, all participants must be from the north and south of England. If you are interested in taking part in a face-to-face interview, please email us no later than Monday 30 July. More information about the project – which looks to expand into other European countries in the future – can be found here.
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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