ENCA MEETING LISBON  - 5.9.- 8.9.2018  - ENCA SESSIONS: Thursday - Friday – 6.9-7.9.2018           

PAIN AND FATIGUE – LIVE WITH IT

THURSDAY, 6.9.2018:

9.00 – 9.30

Opening, introduction of a program and participants, welcome to all, achievements of the committee till now and financial report (Yona), summary of last year (ENCA) - the best practices, changes etc (Wendy), THE WINNER OF THE CONTEST FUN WITH JIA (Wendy), introduction of our next project: JIA WORLD DAY (explanation of the project, timing etc) – WENDY

WENDY COSTELLO, YONA EGERT, METTE OLESEN

 

 

 

 

9.30– 10.30

WORKING GROUPS – WORLD CAFE  - topics: PAIN AND FATIGUE. 3 parts: pain&fatigue at school, at home and in social life

LEADERS: ANITA AND SASKYA; LEADERS AT TABLES:  METTE, WENDY, YONA

10.30 – 11.00

Coffee break

 

11.00 – 12.30

Introduction of Associations in special area – posters, flyers, power points, movies, special websites, apps, special video projects, games, other materials, networking of participants

Leader: Anita (with the list of the rest of participants);

 

 

12.30 – 12.40

PHOTOSHOOTING if necessary

 

12.30 – 14.00

LUNCH WITH NOVARTIS (staying in the room, our lunch will be brought to us) J

INTRODUCTION OF AID HERO WITH WENDY AND SASKYA

14.00 – 14.30

School problems all over the Europe and solutions, debate about what ENCA can do and how

Mirjam Kepic

14.30 – 15.00

Introduction of new website www.enca.org  

Anton Gruss

15.00 – 16.30

 

Joint session with Pres

 

Pain and fatigue

 

 

 

-          PATIENT`s pain and fatigue perspective    15 min

-          PARENT`S  pain and fatigue perspective   15 min
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-          Mechanisms of pain   – 20 min

 

-          Measurement of pain and fatigue - Brian Feldman  – 20 min

 

-          HPPR perspectives of pain and fatigue  - 20 min

 

 

His/her experience with the topic, suggestions for better solutions, changes; from patient`s perspective  -  LEMBE

Parents are 24h/day/year standing by their children. Especially in pain and fatigue. Suggestions, solutions, changes; from parent`s perspective  ANITA

 


Jenny Graham Hagger, physiotherapist, Scotland  

 

Brian Feldman,  MD, MSc, FRCPC, University of Toronto  

 

 Megan Goodale – Occupational Therapy Manager, Kork University hospital Ireland

19.00

DINNER FOR ALL

Organized by Portuguese Association -

 

FRIDAY, 7.9.2018  

9.00 – 9.10

WELCOME again, summary of Friday + PreS

WENDY, YONA, ANITA, ANTON , MIRJAM, SASKYA, METTE

9.10 – 9.50

INVITED SPEAKER:   LUCY WEDERBURN – topic: RESEARCHES IN PEDIATRIC RHEUMATOLOGY AND WHAT IS NEW   40 min

 

 

LUCY R. WEDDERBURN , professor and Consultant of Paediatric Rheumatology, UCL Institute of Child Health London

9.50 – 10.30

INVITED SPEAKER – CARRA USA:

-          Short introduction of CARRA and what they do                     

-          Research  groups patients/parent – how do they do it        

-          Pain and fatigue – how do they manage it in USA                  

VINCENT DELGAIZO (USA)

10.30 – 11.00

Coffee break

 

11.00 – 12.30

PATIENT STORIES – 2-3 patients, focus on a whole story, pain and fatigue, school and psychologist need.

 

 

1.       LUC   -  Saskyaa  (3-5 min movie) – for Q&A: Saskya

2.       CHLOE – NRAS ENGLAND (winner of Pare schools project)

3.       SIBLINGS ARE SUFFERING TOO! Rebecca Arvigo, 20 (Italy)

4.       LINE LUND – patient, Denmark

5.       REIN KLOKS – SIBLING`S STORY (Netherlands)  

12.30 – 14.00

LUNCH

 

14.00 – 14.30

WORKSHOP “WORLD CAFΙ” – RESULTS FROM YESTERDAY

ANITA AND SASKYA

14.30 – 15.00

Suggestions for next year about ENCA projects, research groups etc - debate

ENCA BOARD

15.00 – 15.30

THANKS TO OLD BOARD, WELCOME NEW BOARD, INTRODUCTION OF NEW BOARD MEMBERS, SUGGESTIONS FOR NEXT YEAR AND GOODBYE

ALL MEMBERS OF A NEW AND OLD BOARD, PHOTO

 

version June 20, 2018