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President’s Invitation

Dear friends

We are looking forward once again to seeing as many of you as possible at this year’s Members’ Meeting and general assembly. The meeting will take place on Thursday 15 and Friday 16 November 2018 at our usual venue, The Runnymede Hotel near London Heathrow Airport.

We will be keeping a similar format to last year’s meeting, but have listened to your comments about length of presentations and workshops. There will be a lot to discuss and the agenda will be very busy, but we will ensure there are plenty of breaks to enable you all to network with your colleagues.

The feedback from last year’s members’ sessions was extremely positive, and being able to share your ideas and ‘good practices’ with others is a crucial part of being an EPDA member.

This year we would like your help and involvement in discussing how the EPDA can achieve its four key strategies.  By providing your input, means that we can work together to effect positive change for people with Parkinson’s, their families and carers across Europe.

In addition, we will be discussing the roll-out of the Parkinson’s Disease Composite Scale (PDCS) and how you can all be involved, as well as focussing on the results, recommendations and draft tool kit resulting from the EPDA advocacy survey that many of you completed in February/March of this year. The last session on Friday morning will again be the annual General Assembly.

Can you please complete the registration form and email it back to natalie@epda.eu.com. Please do this as soon as you can so we can ensure that hotel accommodation is secured for you at The Runnymede Hotel.

The deadline for registrations is Friday 14 September 2018

The EPDA Board and team look forward as always to spending time with you all.

Warm regards

Knut-Johan Onarheim

EPDA President

Please download and complete the registration form using the link below and email it to natalie@epda.eu.com.

 

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

 

Papers for the Members' Meeting

Venue, travel and accommodation

Thursday 15 November – Friday 16 November 2018 

Accommodation
Overnight accommodation will be booked for everyone in accordance with the requests on the registration form submitted

Breakfast at the Hotel
Breakfast will be served from 06.45 in the Leftbank Restaurant

IMPORTANT
When booking your flights or other modes of transport please ensure that you take into account the start and finish times of the meeting and ensure that you are able to attend the whole event.

Hotel Details
The Runnymede on Thames
Windsor Road, Egham
Surrey TW20 OAG
UK

Visit the website http://www.runnymedehotel.com/location/find_us/

Transfers  
If you are arriving into Heathrow Airport, the easiest and most cost effective option is to pre book a car. A company that we have used and can recommend is Gemini Cars. It is very easy to pre-book following this link http://www.geminicars.co.uk/booking/. The cost will be approximately GBP 20.00.

IMPORTANT NOTE: Please be aware that if you take a black cab from Heathrow Airport the cost can double and could be in excess of GBP 40.00. So please try to organize your taxi by pre-booking with Gemini (see paragraph above). If you need any help please contact natalie@epda.eu.com

If you are arriving by train the closest train station is Egham, which is on the South West train link out of Waterloo main line station. The hotel is located approximately 5 minute’s drive and 20 minute’s walk from the station. Gemini Cars are located opposite the station.

Registration Terms and Conditions

  • All delegates are required to complete the registration form and return it to natalie@epda.eu.com by Friday 14 September
  • Upon receipt of the registration form, an invoice for the fees applicable – including payment instructions - will be emailed to you.
  • Please ensure that payment is made within 30 days of receiving the invoice
  • An additional 11.5€ (10 GBP) will be added to the total fees to allow for bank charges
  • Please note we can only accept bank transfers
  • Registration fees must be paid by Friday 12 October to guarantee your place

If you do not receive an invoice or you have any queries, please contact Natalie Levenhagen (natalie@epda.eu.com).

Cancellation charges

Should it be necessary to cancel your registration or you do not arrive, the following charges will apply for accommodation and events booked on your behalf:

  • 50% - From completion of registration form until Monday 3 September
  • 75% - From Tuesday 4 September - Monday 15 October
  • 100%  - Tuesday 16 October
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