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EPDA Plus issue 23 (EN)
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EPDA Plus issue 23

Autumn 2013 | English

 





 

 

 

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ISSUE 23 CONTENTS

  • EPDA ready to launch Plus online 
    The EPDA is set to introduce a new section to its website - Plus Online - in order to make its past, present and future content available at all times to everyone in as easy-to-read format.
  • New Unity Walk logo revealed
    The dynamic new logo for the EPDA's second European Unity Walk has been revealed.
  • Letters 
  • Welcome
    If I had to choose two words that are currently at the forefront of the EPDA board's collective mind, they would have to be 'unity' and 'communication'. You cannot have one without the other, and little is achieved without both.
  • News
    • Austrian Parkinson's cookbook launched
      Cooking to Keep Fit, Austria's first Parkinson's inspired cookbook, was launched on World Parkinson's Disease Day in April - offering simple recipes and nutritional tips with the specific needs of people with Parkinson's in mind.
    • Dutch physiotherapists go back to school
      A first-of-its-kind summer school for physiotherapists working with people with Parkinson's took place in Nijmegen, the Netherlands, in July.
    • Deep Brain Stimulation system improved
      St Jude Medical received CE Mark approval for its deep brain stimulation devices in April.
    • 'Creative excellence' award for EPDA film
      The EPDA film "What Life Is Worth?' has won a prestigious award at the US International Film & Video Festival in Los Angeles, the US. The film, which drives home the economic impact of effective Parkinson's care, received the Certificate for Creative Excellence in the Corporate Social Responsibility/Non-Profit category.
    • EPDA member-focused projects 'look positive'
      Two EPDA projects that are focused on interacting with its members are progressing well, according to vice-president Susanna Lindvall.
    • Clinical trial plans target PwPs

      Efforts are being made across Europe to increase people with parkinson's PwPs) knowledge of clinical trials.

    • Lobbyists and EPDA enjoy MRI EU victory
      Lobbying groups, supported by the EPDA, have secured a turnaround in EU policy on the use of magnetic resonance imaging (MRI) machines - a vital tool in the diagnosis and treatment of Parkinson's.
    • Survey reveals NMS prevalence
      People with Parkinson's (PwPs) report non-motor symptoms (NMS) more frequently than motor symptoms, a survey conducted by treatment company UCB in collaboration with patient social network HealthUnlocked has shown.
    • Online learning project for PwPs set to launch
      An online community is being launched to help improve the lives of people with Parkinson's (PwPs), their families and carers across Europe.
    • Irish dancing improves motor function in PwPs, says study
      People with parkinson's (PwPs) could experience improved motor function and a higher quality of life by taking part in traditional Irish 'set dancing', a recent study has shown.
    • US cyclists pedal to fight Parkinson's
      A new bicycle ride that aims to raise awreness and funds for Parkinson's research has been launched in the US.
    • Unity Walks continue to gain momentum in 2013
      While the EPDA has been busy making plans for its second European Unity Walk next yesr in Luxembourg, a number of other Unity Walks for Parkinson's have either been a great success in 2013 or are destined to be very soon.
    • Parkinson's link to diabetes drug
      Researchers at University College London (UCL) have discovered a possible link between a drug used to treat diabetes and benefits for people with Parkinson's (PwPs).
    • Austraialian Prime Minister opens Parkinson's art show
      An art exhibition featuring pieces by Australian PwPs was launched by the country's current prime minister, Kevin Rudd.
    • Fake Drug Threat
      A new report by the Alliance for Safe Online Pharmacy has highlighted the significant cost to the EU of organised criminal activity resulting in patients and consumers buying 'fake' medicines online outside of regulated health systems.
  • World PD Day
    From Bollywood dancing in India and giant shoes in the UK to Unity Walks in Ireland and laughing yoga in Austria... it can only be EPDA Plus's annual review of the EPDA's members' and friends' World Parkinson's Disease Day celebrations. Sit back and be prepared to be inspired for next year...

  • 'Let's walk together!'
    Last September, 1,000 people from 25 countries met in Amsterdam to move together with Parkinson's. The EPDA hopes its members and friends will help make next year's event in Luxembourg just as special. To start things off, EPDA Plus speaks to co-partner Parkinson Luxembourg's Mariella Graziano, who calls on everyone to save the day and start spreading the word about what will be the must-attend Parkinson's event of 2014.
  • A voice for change
    Since January, the EPDA has been carrying out a first-of-its-kind communication research project that aims to explore and enhance the relationship between the organisation and its members. Communications officer Tom Owen discusses some of the key themes that have arisen in his conversations with the members, and explains how the collected information will improve the way the EPDA interacts with national Parkinson’s organisations in the years to come.
  • How to get your voice heard           
    In the previous issue, we began a series of articles focusing on the EPDA's political affairs and policy work. Here, political affairs officer Heather Clarke showcases how, by working with other patient organisations and joining forces with a proactive Euro MP, you can make your voice louder. She also explains how such a strategy can influence the European healthcare agenda and gain valuable press coverage at the same time.
  • EU urged to tackle workplace challenges of neurodegenerative diseases           
    Euro MPs are set to draft a written declaration aimed at improving the quality of life of people living with chronic degenerative brain diseases, particularly within the workplace.
  • Questions and Answers
    Tired of filling in endless Parkinson's related questionnaires without ever fully understanding how the questions were developed or how your answers might actually be used to help you? Using a new questionnaire designed to assess the needs of carers or people with parkinson's as an example, David Morley and Crispin Jenkinson of the University of Oxford attempt to answer the most important questions of all.
  • The personal touch
    While certain existing healthcare technology products offer a few functions that may be specific to Parkinson's, there has yet to be a well-designed personalised product designed by a person living with the disease. Until now. EPDA Plus spoke to Mike Barlow, a person with parkinson's, about his new product, myHealthPal ® . Prepare to be impressed.

EPDA PLUS SUBSCRIPTION

The EPDA Plus is targeted at international healthcare professionals, patient organisations, the treatment industry and external organisations.

It is FREE to subscribers - Terms apply.

You must provide a postal address if you wish to receive a copy by post.

From issue 13, EPDA Plus has been translated into French, German, Italian and Spanish.  These multilingual versions are only available to download.