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THE VOICE FOR PARKINSON'S IN EUROPE

EPDAUPDATE

DECEMBER 2012  ●  www.epda.eu.com

WELCOME

Welcome to the final EPDA Update of 2012 – and what a year it's been! The EPDA turned 20 years old this year and, to celebrate the landmark, we launched a series of carefully planned progressive initiatives throughout the year – on top of our existing activities – to help ensure it was a year to remember and that our long-term strategic plans were continuing in the right direction. And, as you'll see below, it certainly has been memorable.

For us, next year will be equally busy – but in a different way – as we are entering a new era of consolidation where we plan to ask ourselves and our member organisations serious and difficult questions in order to find out who we're reaching – and who we're not – and what we can do to improve our role as the only European umbrella Parkinson's organisation. It will be a hard road but one we're very excited to be travelling on. If you have any questions about any of our activities – past, present or future – do get in touch with us here.

We wish each and every one of you a relaxing Christmas and a prosperous new year. It has been a pleasure working with you all and we look forward to another extremely busy and positive 12 months that will hopefully see the lives of people with Parkinson's and their families across Europe improve dramatically.

READ ALL ABOUT IT!
     

THE EPDA IN 2012

Communication

COMMUNICATION PLAN

This year has seen the EPDA lay the foundations for a new era of unprecedented partnership and teamwork with our members, and the next 12 to 18 months and beyond will be centred around turning our plans into reality. “We've done a lot of thinking in 2012 and we've realised that the only way our mission – which is ‘To become the leading voice for Parkinson's at a European level' – can be achieved is if we interact with our members, listen to them and work with them to a far greater level,” said EPDA president Knut-Johan Onarheim. “The EPDA will, therefore, be conducting intensive research throughout the first six months of 2013 into what the member organisations really want from the EPDA.” You can read more about this new communication plan in the next edition of EPDA Plus, which will be available in January.

 

REBRANDING

In 2011, the EPDA board admitted it needed to refresh its brand identity if it was to provide a unified Parkinson's voice throughout Europe and push the disease up the European political agenda in the future. This year, therefore, saw the subtle-yet-striking refresh across every single aspect of its brand – from its website and printed resources to its marketing, exhibition and stationery materials – to make it more consistent, vibrant and powerful. “The professional nature of the new-look brand has boosted all the work we are doing,” said EPDA director of fundraising and communications Lizzie Graham. "It is helping the EPDA's voice – and those of its members – to be louder than ever before.”

New EPDA website
European Unity Walk 20th Anniversary Conference Working with Social Media

FIRST EUROPEAN UNITY WALK

The first ever European Unity Walk was a complete success after more than 1,000 people from at least 25 countries around the world joined the EPDA to dance and cheer through the streets of Amsterdam on 28 September – all in the name of Parkinson's. Find out exactly what happened on the big day – and read some of the glowing tributes that have flooded in – by visiting the dedicated website where you'll find pictures and details of the historic event. Also, don't miss the special commemorative 8-page pull-out supplement that will appear in the next edition of EPDA Plus, which will be available in January.

ANNIVERSARY CONFERENCE

To celebrate its 20th anniversary year, the EPDA held a special one-day conference in Amsterdam, the Netherlands, in September, which was followed by its annual general assembly. The conference successfully brought together people with Parkinson's (PwPs), family members, healthcare professionals as well as representatives from other patient organisations and the treatment industry. The morning agenda featured presentations from Parkinson's experts while the afternoon session was dominated by a series of interactive workshops designed to encourage national Parkinson's organisations – EPDA members – to share experiences with each other in order to improve services in their own countries. The full agendas to the weekend events can be seen at here. If you would like more details about a particular presentation, please email info@epda.eu.com.

NEW TOOLKITS FOR MEMBERS

The EPDA has launched two new ‘toolkits' this year – one on working with social media and the other on developing an advocacy campaign – to add to its growing collection. The A5 booklets are free to download via the EPDA website and offer national Parkinson's organisations practical information and guidance on a range of topics to help them raise the profile of the disease in their respective countries. The two new additions take the toolkit series to five, with the others offering advice on fundraising, working with the media, and working with the treatment industry. A sixth toolkit – a step-by-step guide to planning a Unity Walk for Parkinson's – is currently being developed and is set to be launched in 2013. To download the free resources, visit www.epda.eu.com/toolkits.

Move for Change EPDA Pledge for Parkinson's POlitical affairs and policy

MOVE FOR CHANGE STILL MOVING

The results from the second online Move for Change survey were published in the European Journal of Neurology earlier in the year. The three-year campaign identifies areas of care that are falling short of the standards set within the EPDA's 1997 Charter for People with Parkinson's as well as current clinical guidelines. The results from the first survey were published last year, while the third and final survey closes at the end of December, when the results will be analysed. It is hoped that the data compiled from these three surveys – the largest European patient survey to date on Parkinson's-related standards of care – will help to assist the disease's stakeholders in their quest for change.

PLEDGE FOR PARKINSON'S

The EPDA's Pledge for Parkinson's outlines how MEPs and other policymakers can work towards improving conditions for people with Parkinson's (PwPs) across Europe. Launched in the European Parliament on 11 April – World Parkinson's Disease Day – it was signed by nearly 50 MEPs and has since been signed by more than 1,120 supporters. The Pledge can be signed by anyone online, and the EPDA urges everyone to sign up to the four-point ‘call to action' that will hopefully lead to positive change for PwPs everywhere.

INCREASED EU ACTIVITY

One of the EPDA's key priorities in 2012 has been to develop its Brussels-based political affairs and policy team and build its profile with policymakers to help push Parkinson's up the European political agenda. Particular highlights this year include: launching the Pledge for Parkinson's and the MEP Support Network in the European Parliament. By joining the MEP Support Network, nearly 50 MEPs from 16 member states willingly committed themselves to raising awareness of Parkinson's and ensuring the disease becomes a European Union healthcare priority. The team has also successfully encouraged and inspired a number of MEPs to help the EPDA and its members in its lobbying activities.

 

EPDA European Parkinson's Disease Standards of Care Consensus Statement

 

CONSENSUS STATEMENT

A second, updated volume of The European Parkinson's Disease Standards of Care Consensus Statement will be available to download by the end of the year. Featuring new appendices with updated references and data, the main content of the document – which defines in plain language what the optimal management of Parkinson's should be – remains the same. The new data comes from the results of the first two Move for Change surveys. A third and final volume of the Consensus Statement will be made available next year after the results from the third survey have been published.

Carer's Consensus Statement

CARERS CONSENSUS

The EPDA has begun developing a ‘sister' publication to the successful The European Parkinson's Disease Standards of Care Consensus Statement – only this time the document will be entirely focused on raising awareness of carers' needs. A number of key European experts in the field of Parkinson's – including healthcare professionals and academics as well as people with Parkinson's, carers and representatives from European patient organisations – joined the EPDA in the UK in November to discuss what the document should be, how it should be structured and who it should be aimed at. The new document will be developed throughout 2013 and further meetings will be planned if they are thought to be necessary. It is hoped that the new Carers Consensus will be published before the end of next year. For more information about the document, please email info@epda.eu.com.

Life with Parkinson's Part III EPDA film Medikidz

EPDA AWARENESS CAMPAIGN FINALE

The EPDA published the third and final part of its groundbreaking Life with Parkinson's (LwP) awareness campaign at its 20th anniversary conference in the Netherlands in September. The launch of Life with Parkinson's: accurate diagnosis, treatment and care was boosted by an ambitious media drive to spread the news as far as possible via print, online and social media channels. “The media drive, prompted by the distribution of a pan-European multimedia press release and enhanced by our sustained activity on Twitter and Facebook, has generated more than 4,600 hits,” said EPDA vice-president Susanna Lindvall, who inspired the development of the LwP campaign. “The press release was posted to more than 360 external online news sites across the world, reaching a potential 74,000,000 online viewers.” Click here for full details about the LwP campaign.

EPDA LAUNCHES PROMOTIONAL FILM

To help the EPDA in its efforts to raise its profile with European policymakers and other key stakeholders – and also to showcase its many achievements over the last 20 years – a short promotional film that charts the EPDA journey since its creation in 1992 was launched on 11 April to celebrate World Parkinson's Disease Day. The film can be viewed here. The film, entitled The EPDA – 20 years improving the lives of people with Parkinson's, focuses on why the EPDA was born, what it has done, what it is doing now and where it is heading.

MEDIKIDZ COMIC COMING SOON

The EPDA has teamed up with innovative healthcare publisher Medikidz to create a revolutionary comic book that explains Parkinson's to children – in simple language. Currently under development in English, Medikidz explain Parkinson's disease is set to be launched on 11 April 2013 – World Parkinson's Disease Day – and will be used to increase awareness of Parkinson's; empower and educate young people who have a family member with Parkinson's; and reduce stigma and discrimination against people with Parkinson's. There are also plans to translate the book into various European languages throughout 2013. Click here to pre-order your FREE copy. Click here for more information about Medikidz and the other disease-related comics in the series.


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