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The EPDA Members' Meeting and General Assembly took place on 15 and 16 November 2018 at The Runnymede Hotel, Surrey, UK.

Agenda

Thursday 15 November, 2018

Timings

11.00 - 18.00

 

10.30 - 13.15

Forum desk

Veronica Clark and Francesco De Renzis

11.00

Registration

Natalie Levenhagen

12.00

Lunch served in Leftbank Restaurant

 

13.00

Members' Meeting

 
 

Welcome

Knut-Johan Onarheim, EPDA president

 

Introduction to EPDA’s long-term strategy (2019-2025) and new Secretary General

Knut-Johan Onarheim

13.10

The EPDA’s revised six-year strategy:

  • To advocate for people with Parkinson’s and their families to get the right information at the right time throughout their Parkinson’s journey.
  • To strive for healthcare systems where people with Parkinson’s receive early and appropriate treatment and individualised care.
  • To raise awareness of the complexities of Parkinson’s and the impact it has on people’s quality of life.
  • To support the global Parkinson’s community in the search for a cure.

Russell Patten

14.00

Discussion

 

15.00

Refreshments

 

15.00 - 15.30

Forum desk

 

15.30

Introduction to workshops

Val Buxton, Board member

15.35

Workshop/strategy 1: How can we (the European Parkinson’s community) work together to ensure all people with Parkinson’s and their families get access to the right information at the right time

Facilitator: Veronica Clark

Scribe: Francesco De Renzis

 

Workshop/strategy 2: How can we (the European Parkinson’s community) work together to ensure European healthcare professionals get access to quality Parkinson's educational resources

Facilitator: Val Buxton

Scribe: Natalie Levenhagen

 

Workshop/strategy 3: How can we (the European Parkinson’s community) work together to educate and raise awareness of Parkinson’s among decision makers

Facilitator: Russell Patten

Scribe: Emily Richardson

 

Workshop/strategy 4: How can we (the European Parkinson’s community) work together to raise awareness of the research opportunities that are available to people with Parkinson’s and their families

Facilitator: Dominic Graham

Scribe: Christian Jebsen

16.45

Workshops close

 
 

Comfort break

 

17.00

Summary of workshop discussions

Facilitators

17.45

Close and thanks

Knut-Johan Onarheim

17.45 - 18.15

Forum desk

 

19.30

Dinner in a private room

 

Friday 16 November, 2018 

Timings

09.00 - 13.00

 

09.00

Welcome

Knut-Johan Onarheim, EPDA president

09.05

EPDA Forum

Veronica Clark, Board member

09.20

Advocacy activities in 2018 including members’ survey and Young onset Parkinson’s event in European Parliament

Christian Jebsen, Grayling

10.05

Parkinson’s Composite Scale rollout including website, webinar, videos and pilots

Christian Jebsen, Grayling

10.50

Refreshments

 

11.20

European Parkinson Therapy Centre (4 pillars approach and collaboration)

Alex Reed

11.50

Discussion

 

12.00

General Assembly

 
 

EPDA President’s Statement

Knut-Johan Onarheim

 

EPDA’s 2017 Financial Report

Lizzie Graham

 

Appointment of EPDA’s Accountant

Lizzie Graham

 

Membership fee proposal (2019)

Knut-Johan Onarheim

 

Nominations for Board members

Knut-Johan Onarheim

 

EPDA activity 2018 - 2019

Dominic Graham

 

#UniteForParkinsons campaign

Dominic Graham

 

UCB survey

Dominic Graham

13.10

Close and thanks

Knut-Johan Onarheim

13.15

Lunch in Leftbank Restaurant

 

14.30

Departures

 

Documents for the Members' Meeting

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