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Partnered projects

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A number of Parkinson’s-specific initiatives are currently being developed across Europe that combine the expertise of a number of researchers, scientists, other healthcare professionals, patients and patient organisations. The EPDA is actively involved in a number of them and details of these are available in this section.

EUROPAR

EUROPAR

The EUROPAR project has been created to research the non-motor symptoms (NMS) of Parkinson’s. The project’s committee, which consists of healthcare professionals, people with Parkinson’s (PwPs) and patient organisation representatives, aims to represent the interests of PwPs throughout Europe by establishing a research centre at King’s College Hospital in London, the UK.

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Physiotherapy for Parkinson's disease - A joint European Guideline


The European Guideline for Physiotherapy in Parkinson's Disease

Member organisations of the European Region of the World Confederation for Physical Therapy (ER-WCPT) have developed The European Guideline for Physiotherapy in Parkinson’s Disease.

This guideline updates the only existing guideline for physiotherapy in Parkinson’s, which was published in 2004 by the Royal Dutch Society for Physical Therapy (KGNF). The new, updated guideline aims to meet the individual European countries’ Parkinson’s needs (in relation to physiotherapy) and will fulfill internationally accepted standards.

A copy of the European Physiotherapy Guideline for Parkinson’s disease can be be downloaded at www.parkinsonnet.info/euguideline.

The Guideline development was initiated and mainly sponsored by ParkinsonNet and the Royal Dutch Society for Physical Therapy. The Guideline Development Group represents professional physiotherapy associations from 19 European countries.

People with Parkinson’s disease were involved in the Guideline development from the outset and have contributed throughout the process. Dr. Samyra Keus, who lead the development: “It was a unique and challenging collaboration, with a great product as result. The Guideline will be helpful to all involved in Parkinson care who, supporting evidence-based, patient centred care”. Therefore, the Guideline comes in four parts:

  • The Guideline, mainly for physiotherapists: background on Parkinson’s disease and health management, physiotherapy core areas and rationale and evidence for categories of interventions
  • Information for people with Parkinson’s: self-management support and how to get the best out of physiotherapy care
  • Information for clinicians: when to refer to physiotherapy and what to expect
  • Information to the development and scientific justification of the Guideline: insight in the barriers and facilitators of current care and details to measurement tools and the GRADE-based recommendations.

For more information, please contact Dr. Samyra Keus: Samyra.keus@radboudumc.nl

 
European Physiotherapy Guideline for Parkinson's disease


The guideline is now available

Newsletters

 

1 hour more
 
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 - The Content Agency, with the endorsement of the European Parkinson’s Disease Association (EPDA) and with 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

Following on from 11 April 2016 - World Parkinson's Disease Day - the project has moved another step forward from the previous key question – ‘What would you do if you had one more hour a day?’. By taking a visual approach and using the scribing technique, BookRepublic has produced 12 videos that ‘tell’ stories of courage and reaction to the condition.

Each video focuses on a specific aspect of living with Parkinson’s, condensed in a simple keyword. The first keyword is #Companionship, and this will be followed by new keywords every 15 days throughout 2016. The keywords' task is to sum up a story regarding the three groups of people involved - people with Parkinson’s, caregivers, healthcare professionals - in less than two minutes.

Read 11 April 2016 Press release about the project.

Keywords:


#companionship #sleepingcycle #communicate #copingstrategy #stepbystep #bepatient #takeyourtime #ToDoList #EatingWell #RethinkTogether #StrongRelationship #Adherence


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Endorsed by the EPDA