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 (Wendy), THE WINNER OF THE CONTEST FUN WITH JIA (Wendy), introduction of our next project: WORLD YOUNG RHEUMATIC DISEASE DAY

ENCA board

9.30– 10.00

WORKING GROUPS – WORLD CAFFE`S : 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 2.PART

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

14.00 – 14.30

School problems all over the Europe and solutions

Mirjam Kepic

14.30 – 15.00

Introduction of new website www.enca.org 

Anton Gruss

15.00 – 16.30

Joint session with Pres

Topic:

Pain and fatigue

• Mechanisms of pain and fatigue  – 20 min
• PATIENT`s pain and fatigue perspective    10 min
• PARENT`S  pain and fatigue perspective   10 min
  --------------------------------------------------------

• Measurement of pain and fatigue – 20 min
• HPPR perspectives of pain and fatigue  - 15 min
• Management of pain – physiotherapy perspective – 15 min

Jenny Hagger, physiotherapist, Scotland
LEMBE KULLAMAA

ANITA VAN DE LOUW

_________________

Brian Feldman, MD, MSc, FRCPC, University of Toronto
Megan Goodale – Occupational Therapy Manager, Kork University hospital Ireland

Lauren Stone (UK)

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 Pediatric 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 Organization and what/how they do
• Research  groups patients/parent – how do they do it        
• Pain and fatigue – how do they manage it in USA                 

VINCENT DELGAIZO (CARRA USA)

11.10 – 12.30

PATIENT STORIES   - topics: pain and fatigue, school and siblings

1. LUC   -  Saskya  Angevare (3-5 min movie) Netherlands
2. CHLOE SCARLETT– NRAS ENGLAND (winner of Pare school project)
3. SIBLINGS ARE SUFFERING TOO! Rebecca Arvigo, 20 (Italy)
4. LINE LUND – patient, Denmark
5. REIN KLOKS – SIBLINGS ARE SUFERING TOO (Netherlands) 

12.30 – 14.00

LUNCH WITH NOVARTIS 

INTRODUCTION OF AID HERO WITH WENDY AND SASKYA

14.00 – 14.30

 “WORLD CAFFÉ” – RESULTS

ANITA VAN DE LOUW AND SASKYA ANGEVARE (NETHERLANDS)

14.30 – 15.30

NEXT YEAR TOPICS OF ENCA

ENCA BOARD

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

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
----------------------------------------------------------------------------------

 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

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 - (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 CAFFÉ” – RESULTS

ANITA VAND EN LOUW and SASKYA ANGEVARE

14.30 – 15.00

Next year topics of ENCA

ENCA BOARD

9.00 – 9.45

Opening, reports, introductions of participants, winner of the contest “FUN WITH JIA”

Wendy COSTELLO – President of ENCA and Yona EGERT  (treasurer)

9.45 – 10.10

Other inflammatory diseases 

KAISZ Netherlands -  Autoimmune and inflammatory diseases  (Saskya ANGEVARE)

10.10 – 10.30

Other inflammatory diseases

LUPUS UK (Kevin WESTON)

10.30 – 11.00

Coffee break

11.00 – 12.00

Introduction of ENCA members (associations): 

REPA (Greece), AMRI (Italy), ICAN (Ireland)

12.00 – 12.30

Focus groups

What is the biggest problem in your country? What is the biggest advantage?

12.30 – 12.40

Photoshooting

12.30 – 14.00

Lunch

14.00 – 14.30

New developments and new  strategies : optimising treatment  in JIA 

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

15.00 – 17.00

JOINT SESSION WITH PreS

1. introduction of ENCA
2. What is really bothering my patient/parent ? patient perspective
3. What is really bothering my patient/parent ? parent perspective 
4. What is really bothering my patient/parent ? health professional  perspective 
5. Insight and recommendations resulting from analysis of parent survey in SHARE project
    

Room No.: SKALKOTA HALL

Wendy COSTELLO, president of ENCA (Ireland)

Simon STONES (patient), UK

Sarah DALTON (HPPR + parent) , UK
Mirjam KEPIC (parent) , Slovenia

Janjaap VAN DER NET, HPPR (Netherlands)

Bas VASTERT (Netherlands), Tsipi EGERT (Israel)

19.00

DINNER

Organized by Greek association

9.00 – 9.10

Summary of yesterday

Wendy COSTELLO, Yona EGERT, Anita VAN DE LOUW, Anton GRUSS, Mirjam KEPIC

9.10 – 9.30

Patient story: 

Topic: Adolescent issues

Simon STONES (UK)

Manca KEPIC  (Slovenia)

9.30 – 10.00

Introduction of Associations

ORKA (Belgium) and Slovenia

10.00 – 10.30

Results of FOCUS GROUPS (survey), questions, debate             

Leader : Anita VAN DE LOUW, ENCA

10.30 – 11.00

Coffee break

11.00 – 12.00

Session/teenage, drugs, alcohol, sex

Psychologist view

Leader : Wendy COSTELLO

Klaire CONNOR, Arthritis Care  Scotland

Margarita TSITSI, Psychologist  (Greece)

12.00 – 12.40

Introduction of associations  (20 min each)

Karin BERGSTROM (Sweden)

12.30 – 14.00

Lunch

14.00 – 14.10

Voting

Voting for ENCA board, Wendy COSTELLO

14.10 – 15.00

Self management + pain management
 

1. Coping with pain from a biopsychosocial perspective
2. Introduction of BACK AND FORTH – coping with JIA in school (communication and how to deal with the disease in the family/informal way
3. Introduction of BORDERGAME – a communication board game to play with family; development and experiences
4. Exchange experience and debate (5 min)

Leader of the session: Wendy COSTELLO

Lizanne BENTVELSEN, occupational therapist (Netherlands)

Jeannette CAPPON, pediatric physical therapist, Netherlands

Yvonne HEIJLIGERS, occupational therapist, Netherlands

15.00 – 15.30

Doctor vs. Rheumatologist vs. Pediatric rheumatologist and vaccination

Prof. Dr. Nico WULFFRAAT, Netherlands

15.30 – 16.00

Topics for next year

Wendy COSTELLO – President of ENCA