Friday, 09 May 2008

2008 Work Programme



Partnership for Progress - ‘Promoting a constructive dialogue between science and society’

The EPDA achieves its success through combining the strengths and experiences of its partners. It has provided an important forum to work in collaboration with European organisations, both patient and neurological, the European Commission, the World Health Organisation, the World Federation of Neurology, and the pharmaceutical industry. This partnership has enabled the development of research projects into quality of life issues, and conferences for multidisciplinary teams and people with Parkinson's of any age.

The EPDA depends on the support of external organisations and companies for funding.

Diamond Platinum Gold Silver Bronze Partnership funding (core funds)

3 years in kind and/or cash valued at 30,000 Euro or more a year

Commitment in kind and/or cash valued at 30,000 Euro or more a year

Commitment in kind and/or cash valued between 20,000 and 30,000 Euro a year

Commitment in kind and/or cash valued between 10,000 and 20,000 Euro a year

Commitment in kind and/or cash valued between 5,000 and 10,000 Euro a year

This non-restricted funding is supplied on an annual basis by external organisations and companies to enable the EPDA to maintain the organisation including: Auditors, General Assembly, Management, Board meetings, Administration, Website & Publications

In addition to providing non-restricted core funding, there are opportunities for companies to partner with the EPDA on individual projects and conferences (as set out below) which are of mutual benefit to all concerned.

Publications for production in 2008

 Date Funding confirmed Funding required for completion

EPDA Plus

http://www.epda.eu.com/epdaPlus

Opportunities to provide editorials and advertising
http://www.epda.eu.com/PDInfo/Publications/EPDA/epdaPlus/editorial_advertisingContactForm.asp

Partners
Solvay Pharmaceuticals

 

April, August, December

 

5,000 €

 

25,000 €

EPNN Journal

http://epda.eu.com/epnn/epnnJournal

Opportunities to provide editorials and advertising
http://www.epda.eu.com/PDInfo/Publications/EPDA/advertisingRates.asp

Partners
Britannia Pharmaceuticals & GE Healthcare

 

April, August, December

 

30,000 €

 

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Top of page

 

Projects in 2008

Date Funding confirmed Funding required for completion

Patient Decision Aid:

Focusing on the importance of communication and agreement between the patient and their physician by working with the member organisations, EPDA medical advisory board members and the pharmaceutical industry to compile a simple guide to aid communication and concordance.

Partners
GlaxoSmithKline, Medtronic Foundation, Novartis, Orion, Solvay Pharmaceuticals
The Cure Parkinson's Trust

 

Start Date
July 2006

Launch Date
10 April 2008

 

109,050 €

 

22,000 €

PD Nurse Specialists

The aim of this project is the uniform development of PDNS practice and to establish an international framework for guiding the development of minimal standards and core competencies in specialty-focused nursing practice in partnership with ICN, Working Group on PD and the EPDA.

Partners
Britannia, Lundbeck, Novartis, Orion Pharma & Solvay Pharmaceuticals

 

Start Date
June 2006

Completion Date
December 2008

 

54,373 €

 

15,616 €

Occupational therapy practice throughout Europe

This is a pilot study being conducted to collect the evidence of OT awareness among PD patients in different stages and OT practice as perceived by PD patients themselves.

Partners
Solvay Pharmaceuticals

Start Date
March 2008

Completion Date
December 2008

40,000 €

10,000 €

Parkinson’s Awareness Campaign – Animated Video

This campaign will heighten awareness and enable increased provision of resources and funding for Parkinson's management.

Improving the understanding and knowledge about people with Parkinson’s and their families and the impact it has on daily life is relevant for all stages of the disease.

Using animation it will be possible to demonstrate ‘what life is like’ and the difficult daily situations that people with Parkinson’s face (carrying out a simple action that the majority of us take for granted) i.e. getting on and off public transport.

This video/DVD will be an educational resource for:

  • Decision makers
  • Healthcare professionals
  • General public

Partners
Solvay Pharmaceuticals

Start Date
January 2008

100,000 €

ongoing
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Ongoing developments throughout 2008 & 2009

 Date Funding confirmed Funding required for completion

Rewrite Tomorrow

This website seeks to bridge the current patient information gap for Parkinson's management. With the support of our experts, we are gathering and reviewing important information that will enable better management on a daily basis and enhance independence.

Partners
Medtronic Europe

Start Date
January 2006

13,400 €

ongoing

Coping Strategies – Tips and Tricks

Available via website and DVD

A new website and DVD are in the process of being developed to share coping strategies or Tips & Tricks that have been created by people with PD to assist them in their daily lives. The site will contain coping strategies on several aspects of living with PD including speech and swallowing, occupational therapy etc.

Data has been collected from Ireland, Luxembourg, Slovenia, Japan, South Africa and Italy.

Partners
Lundbeck, Medtronic, Novartis, Orion Pharma, Schwarz Pharma, Solvay Pharmaceuticals & Teva

 

 

Start Date
April 2005

Launch Date
February 2008

 

 

15,788 €

 

 

10,000 €

 

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Conferences and Events taking place in 2008

 Date Funding confirmed Funding required for completion

World Parkinson's Disease Day

10 April, Cairo, Egypt

Partners
Bayer Schering, Britannia, GE Healthcare, Medtronic Mediterranean, Norgine, Orion, Solvay, UCB

      

EPDA 7th euroYapmeet Conference, Croatia

4 - 6 October, Zagreb, Croatia

The EPDA will be holding their annual 1.50 day conference, prior to their General Assembly.

For the first time, the EPDA is offering the opportunity for companies to hold their own symposia alongside the conference.

Partners
Medtronic

October

8,000 €

92,500 €

Eastern European Road Shows

This is an ongoing initiative that began in 2007 with a partnership between Hungary and Sweden.

2008 location to be confirmed.

Partners
tbc

 

tbc

 

0 €

 

30,000 €
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Miscellaneous 2008

Date Funding confirmed Funding required for completion

Travel Grants for EPDA Board Members

It is required that the EPDA elected Board participate in:

  • 2 Board meetings per year
  • 1 Conference and General Assembly

 

Beginning

January to December

 

0 €

 

35,000 €

Board Members are:

  • Stephen Pickard - President - Brussels
  • Susanna Lindvall - Vice President - Sweden
  • Knut-Johan Onarheim - Member at Large - Norway
  • Branko Šmid - Treasurer - Slovenia
  • Mariella Graziano - Secretary - Luxembourg
  • Tom Isaacs - Young-Onset Representative - United Kingdom
  • Mahendra Gonsalkorale - Member
  • Lizzie Graham - Secretary General - United Kingdom

The travel and accommodation costs, estimated to be 2,500 € per person per year, is met by the EPDA core funding.

Partner
tbc