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

see the complete PReS program and locations at https://www.pres.eu/pres2018/scientific-programme.html

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

ENCA board

 

 

 

 

9.30– 10.00

Working groups – WORLD CAFFE  - topics: PAIN AND FATIGUE. 3 parts: pain&fatigue at school, at home and in social life

Leaders: ANITA VAN DE LOUW AND SASKYA ANGEVARE; Leaders at tables:  METTE OLESEN, WENDY COSTELLO, YONA EGERT

10.00 – 10.30

Coffee break

 

10.30 - 11.30 WORLD CAFFE Part 2  

11.30 – 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 Van De Louw

 

 

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 KULLAMAA

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

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

 

 

FRIDAY, 7.9.2018  

9.00 – 9.10

WELCOME again, summary of Friday + PReS

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

9.10 – 9.55

INVITED SPEAKER:   LUCY WEDERBURN – topic: RESEARCHES IN PEDIATRIC RHEUMATOLOGY AND WHAT IS NEW  Questions and debate

 

 

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

10.00 – 10.30

Coffee break

 

10.30 – 11.10

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)

11.10 – 12.30

PATIENT STORIES – topics : pain and fatigue, school and siblings.

 

 

LUC   -  SASKYA ANGEVARE (3-5 min movie) (Natherlands)

CHLOE SCARLETT – NRAS ENGLAND (winner of Pare school project)

SIBLINGS ARE SUFFERING TOO ! REBECCA ARVIGO, 20 (Italy)

LINE LUND – patient, Denmark

REIN KLOKS – SIBLINGS ARE SUFFERING TOO (Netherlands)  

12.30 – 14.00

LUNCH

 

14.00 – 14.30

WORKSHOP “WORLD CAFFΙ” – RESULTS

ANITA VAND EN LOUW and SASKYA ANGEVARE

14.30 – 15.00

Next year topics of ENCA

ENCA BOARD

 

version July 4, 2018