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EPDA Plus issue 21
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EPDA Plus issue 21

Winter 2013 | English

 





 

 

 

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ISSUE 21 CONTENTS

  • European Unity Walk a 'triumph'
    The EPDA's first ever European Unity Walk has been hailed a "complete success" after more than 1,000 people from 25 countries around the world danced and cheered through the streets of Amsterdam on 28 September - all in the name of Parkinson's.
  • Letters 
  • Welcome
    As one of the 1,000-strong participants said at the European Unity Walk - 'We did it.....together.'
  • News
    • 'Carers Consensus' gets off the ground
      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.
    • Join the movement 
      A series of webinars aimed at people with parkinson's, healthcare professionals and scientists has been launched by Parkinson's Movement, an initiative of the Cure Parkinson's Trust.
    • Tell MJFF your story
      A social media campaign encouraging people with Parkinson's to share their experiences of living with the condition has been launched by the Michael J Fox Foundation (MJFF).
    • New pharma website
      A pharmaceutical company has launched a website that provides patients, carers and healthcare professionals with News and information about Parkinson's.
    • Swedish book to take PD 'into the home'
      Swedish Parkinson's Foundation, ParkinsonFörbundets Forskningsfond, has launched a unique art and photographic book in an attempt to create more awareness about Parkinson's.
    • Norwegian PD group speaks out
      The Norwegian Parkinson's organisation, Norges Parkinsonforbund, has participated in a healthcare consultation in its national parliament, advocating on behalf of people with neurological diseases.
    • Israeli video inspires PwPs
      An Israeli neurologist and person with Parkinson's (PwP) has produced an educational video that shows the challenges of living and dealing with the disease on a day-to-day basis.
    • Campaign after 'shocking' poll
      Parkinson's UK has launched its first ever public awareness campaign after it was revealed that nearly 8 out of 10 Britons know little about the disease.
    • Evidence backs cycling benefits
      People with Parkinson's (PwP's) may be able to reduce their symptoms by emulating UK cycle hero and Tour de France champion Bradley Wiggins, new research claims.
    • EBCs 'Age of the Brain' unveiled
      The European Brain Council's (ECB) 'Year of the Brain' project has trebled in size due to early positive feedback from the scientific and healthcare community.
    • US challenge no sweat for fundraiser Flynn
      Alex Flynn, a 40-year-old person with Parkinson's, has completed the Trans America Challenge, which saw him run, row, cycle and kayak 3,500 miles across the US.
    • Finnish work website helps PwPs
      A new website aimed at helping people with Parkinson's (PwPs) to better manage their working lives has been launched in Finland.
    • Media buzz supports EPDA book launch
      The EPDA has published the third and final part of its groundbreaking Life with Parkinson's (LwP) awareness campaign. The EPDA supported the launch of the booklet, entitled Life with Parkinson's: accurate diagnosis, treatment and care, with an ambitious media drive to spread the news as far as possible via print, online and social media channels.
  • Health survey call
    Researchers investigating health and long-term care issues across Europe are looking for participants to share their experiences of choosing healthcare providers. 
  • 'Help' is at hand
    A system designed to monitor the needs of people with Parkinson's has won an aware for its innovation, human-centred approach and market potential.
  • Depressing data
    Non-motor symptoms in Parkinson's - especially depression - affects quality of life more than the disease's motor symptoms such as tremor, according to new research.
  • Mind matters
    Former EPDA president and current patron Mary Baker told delegates about the European Brain Council's plans for its groundbreaking initiative the Age of the Brain.
  • Watch and learn
    The EPDA's promotional film, entitled The EPDA - 20 years improving the lives of people with Parkinson's, was shown to delegates at the annual general assembly.
  • Putting in the effort
    Delegates revealed how exercise plays a key role in many of the EPDA member organisations' work programmes.
  • Delegates embrace 20th anniversary conference
    To celebrate its 20th anniversary year, the EPDA held a special one-day conference in Amsterdam, the Netherlands, last September , which was followed by its annual general assembly.
  • We need to talk...           
    The EPDA is entering a new era of unprecedented partnership and teamwork with its members. In this special article, Lizzie Graham talks directly to its 45 member organisations to explain its new communication plan in more detail and urges them to support the strategy behind it.
  • European Unity Walk Special
  • United Nations
    Find out how the EPDA's first ever European Unity Walk brought together more than 1,000 people from 25 countries around the world to Amsterdam in September 2012 with one united objective - to move together for Parkinson's disease.
    • 'Serious fun'
      EPDA president Knut-Johan Onarheim looks back on the European Unity Walk with deep pride but insists the Parkinson's community cannot rest yet - much more work needs to be done
    • 'Yes, we did it.....Together'
      People with Parkinson's and their families and friends reveal what the day meant to them
    • 'United we stand'
      We've seen people with Parkinson's, their families and friends speak out in favour of the first-ever European Unity Walk. But what did the rest of the Parkinson's community - not always the most united of groups - think about it? EPDA Plus decide to find out.
    • 'We must build on our plan'
      EPDA vice-president Susanna Lindvall has a grand plan for the future: a Europe full of Unity Walks for Parkinson's
  • Changing times? 
    The results from the second Move for Change survey have now been analysed and published. So, do people with Parkinson's get access to support services? And have their standards of care improved since 1997? Professors Fabrizio Stocchi and Bastiaan Bloem find out.
  • The road to health
    Can we make sure our healthcare service systems provide value for money but at the same time meet the needs and preferences of patients? Yes we can, says Beverly Barr, as she explains health technology assessment - a system designed to provide a clear, careful evaluation process where everyone involved in the healthcare process is allowed to contribute. 
  • Perfect partners
    Physiotherapy is an ideal resource for managing Parkinson's symptoms. It is also popular and clinically effective. Despite this, little consistent support for the discipline or its specialist practitioners is generally available across Europe. APPDE president Mariella Graziano explains how things are changing for the better.
  • Smart thinking
    From mobile smartphones to interactive computer games, technology is changing the way healthcare professionals understand and manage Parkinson's. Professor Tapani Keranen talks to EPDA Plus about the tools and resources available to people living with the disease in a rapidly changing world.


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

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