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European Parkinson's Disease Association
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Resources and publications

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EPDA toolkits

These toolkits are a special resource for EPDA member organisations that offer practical information and guidance on a range of topics to help patient organisations raise the profile of Parkinson’s in their respective countries. Six toolkits are currently available:

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The European Parkinson’s Disease Standards of Care Consensus Statement

The European Parkinson’s Disease Standards of Care Consensus Statement

The EPDA developed The European Parkinson’s Disease Standards of Care Consensus Statement to define in plain language what the optimal management of Parkinson’s should be. The fact is there was no such European consensus on Parkinson’s management in existence – and furthermore no overall definition of what good-quality care should consist of.

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Publications

Life with Parkinson's


Life with Parkinson’s

The EPDA’s Life with Parkinson’s booklets provide information on Parkinson's disease that have been translated in many languages.

The first booklet highlights the importance of an early diagnosis as well as advanced disease management.

Book 2 focuses on the disease’s non-motor symptoms and demonstrates the complexities of Parkinson’s.

The third booklet looks at the need of an accurate diagnosis and the importance of the right treatment for the right person at the right time.

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1 hour more
 

The storytelling project “1 hour more” aims to raise public attention about Parkinson’s disease at an international level, providing people with Parkinson’s with emotional and practical support. 

This storytelling project is realised by Bookrepublic, with the endorsement of the European Parkinson’s Disease Association (EPDA) and the sponsorship of Zambon SpA.

The heart of the project is a book of 24 real-life stories of hope and reaction written by a professional author and validated by the EPDA. The stories focus on the value of ‘time’ for people impacted with Parkinson’s, i.e. people with Parkinson’s, carers and healthcare professionals. There is also a practical part to the project, which is represented by a booklet of useful tips suggested by the people who have provided their stories (the interviewees). To support the project, a dedicated digital storytelling platform has been developed – 1hourmore.eu. From here, the community can read interesting stories but also submit their own personal stories on the value of time, answering the key question: “what would you do if you had one hour more a day?”. The identity of the people involved will not be revealed in the book, nor online. They will remain anonymous.

The book will be free of charge, and neither the EPDA nor Zambon will receive any compensation for its reproduction and distribution.


Website: www.1hourmore.eu

My Life, My PD


My Life My PD

This booklet, available in four languages – English, German, Spanish and Swedish – is a handy reference guide, providing people with Parkinson’s with practical advice on managing many of the day-to-day aspects of the disease. 

Packed with useful action tips, it includes questions that can be used when talking with the doctor and that can result in positive changes to day-to-day life. Topics include getting the most out of life; improving speech and communication; healthcare support; and how to get the best out of Parkinson’s medication to improve quality of life.


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APD Pathfinder


Advanced Parkinson's Pathfinder

There are a number of highly effective treatments for Parkinson’s, but the challenge for clinicians can be choosing the most appropriate treatment for the right person with Parkinson's (PwP). Therefore the involvement of the PwP in the decision-making process is crucial; developing an understanding of what is happening to them, and communicating this with their healthcare team, will help them to receive the best possible care.

This book explains what to expect as Parkinson’s progresses, how the treatments might change, and how people can get the most out of their healthcare team.

This educational guide was developed in a collaboration between the EPDA and Abbott, and was fully funded by Abbott.


Coping strategies


Coping Strategies - Tips and Tricks

Coping Strategies – Tips and Tricks is a collection short film clips that showcase tips and tricks created by people with Parkinson’s (PwPs) and their carers to help manage their difficult moments when medication is not so effective and Parkinson’s symptoms occur. 

The clips are available in seven languages – Chinese, Dutch, English, French, German, Italian and Spanish – and are accompanied by a short written explanation to help explain the strategies.

The clips were presented by PwPs during various EPDA physiotherapy workshops that were held across the world between 2004 and 2007.


 

External scientific journals

The following external scientific journals focus on Parkinson's disease and neurology in general. The EPDA is delighted to have been offered this opportunity to host these resources and to make them accessible to our readership.


European Medical Journal
     

European Medical Journal

EMJ is a specialist publisher who combines editorials from key opinion leaders with concise news coverage from renowned congresses within the industry, delivering world-class insights to the key developments and advancements within both clinical and pharmaceutical areas.

Each journal covers one of 15 different specialist areas: from Neurology to Dermatology, providing a unique view of the respective congress in Europe. The journal’s collaborations with eminent, independent industry bodies create a dynamic tool which assists physicians and leading industry professionals to continuously develop their effectiveness.

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Touch Neurology
     

European Neurological Review

European Neurological Review enables time-pressured physicians to stay abreast of key advances and opinion in neurological practice in Europe. The journal comprises balanced and comprehensive articles written by leading authorities addressing the most important and salient developments in the neurological field. The journal endeavours to support physicians and related healthcare professionals in continuously developing their knowledge and effectiveness. 

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Focus on Parkinson's Disease

Focus on Parkinson's Disease

Produced by Excerpta Medica, Netherlands

Supported by an unrestricted educational grant from F. Hoffmann-La Roche Ltd, Basel, Switzerland

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Dove Press
     

Journal of Parkinsonism & Restless Legs Syndrome

Journal of Parkinsonism and Restless Legs Syndrome is an online, open access, peer-reviewed journal. The journal publishes review articles, historical reviews, original research articles, case reports, letters to the editor, clinical teaching cases, neuroradiology highlights, neuropathology highlights, and neuropsychiatry highlights.

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Molecular Neurodegeneration
     

Molecular Neuro-degeneration

Molecular Neurodegeneration is an open access, peer-reviewed online journal that encompasses all aspects of neurodegeneration research at the molecular and cellular levels.

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