ENCA MEETING ATHENS, Friday 15/9 Saturday 16/9 pain and self management, other inflammatory diseases

                                                                                            CHILD IN THE LEAD

 

On behalf of the committee of ENCA we would like to invite you to our conference in Athens

Please join us for the welcome ceremony on Thursday 14th September at 6pm and our ENCA conference on 15th/16th

For more information please contact us on secretary.enca@hotmail.com or see the PRES website http://www.pres.eu/pres2017/scientific-programme.html

The tentative ENCA program is given below (update July 3, 2017)

 

FRIDAY, 15/9/2017:   OTHER INFLAMMATORY DISEASES, LATEST RESEARCH AND PreS

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) introduction

10.10 10.30

OTHER INFLAMMATORY DISEASES

LUPUS UK (Kevin Weston) introduction

10.30 11.00

Coffee break

 

11.00 12.00

Introduction of ENCA members (associations): 

GREECE, ITALY, 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 Consultat of Paediatric Rheumatology, UCL Institute of Child Health London

15.00 17.00

JOINT SESSION WITH PreS

 

1.       introduction of ENCA; parent story (Glenda Dalton; health professional, pediatric, physio), patient story

 

2.       What is really bordering my patient/parent? Parent: Mirjam Kepic, Patient: Simon Stones, HPPR: Janjaap van der Net 

 

3.       SHARE project from PARENT perspective

 

4.       Questions  10 min

Room No.: SKALKOTA HALL

 

Wendy Costello, president of ENCA (Ireland)

Glenda Dalton (HPPR + parent) , UK

 

Mirjam Kepic (parent) , Slovenia, Simon Stones (patient), UK,
Janjaap van der Net, HPPR (Netherlands)

 

Tsipi Egert (Israel), Nico Wulffraat,  Pieter Dijkhuizen (Netherlands)

19.00

DINNER

Organized by Greek Association

 

SATURDAY, 16/9/2017:  PAIN MANAGEMENT, SELFMANAGEMENT, TEENS AND US

9.00 9.10

WELCOME again, summary of Friday + PreS

WENDY, YONA, ANITA, ANTON , MIRJAM

9.10 9.30

Patient story: SIMON (UK) and MANCA (Slovenia) 

 

TOPIC: ADOLESCENT ISSUES

SIMON STONES (about his experience with the disease since the beginning, teenager, now, pain management, things that helped him), his role now in JIA + patient: MANCA KEPIC Slovenia (her story, teenage problems etc)

9.30 10.00

Introduction of Associations

BELGIUM (20MIN) AND SLOVENIA (10 min: only the movie)

10.00 10.30

Results of a FOCUS GROUPS (survey), questions, debate          

Leader: Anita

10.30 11.00

Coffee break

 

11.00 12.00

Session/teenage, drugs, alcohol, sex: Catherine Wright (Arthritis care)

CATHERINE WRIGHT (their problems, solutions, her story as a patient with JIA) +  Margarita Tsitsi (psychologist, Greece), 3 x 20 min sessions, leader: Catherine Wright

12.00 12.20

INTRODUCTION of  Associations 

Sweden

12.20 12.40

TIME FOR DEBATE/DISCUSSION

Participating at ENCA countries, Associations, leader: Wendy, Anita

12.40 14.00

LUNCH

 

14.00 14.10

VOTING

VOTING FOR 2 MEMBERS WHO WILL JOIN ENCA BOARD

14.10 15.00

SESSION self management + pain management

 

  1. COPING WITH PAIN from a biopsychosocial perspective  (15 min)
  2. introduction of BACK AND FORTH coping with JIA in school (communication and how to deal with the disease in the family/informal way (15min)
  3. introduction of BORDERGAME a communication board game to play with family; development and experiences

(15 min)

  1. exchange experience and debate (5 min)

Leader of the session: Wendy Costello

 

Lizanne Bentvelsen, occupational therapist

 

Jeannette Cappon, pediatric physical therapist, Netherlands

 



Yvonne Heijligers, occupational therapist

15.00 15.30

DOCTOR VS. RHEUMATOLOGIST VS. PEDIATRIC RHEUMATOLOGIST and VACCINATION:  yes or no and when

Nico Wulffraat

15.30 16.00

Meeting next year + main topics for next year, suggestions, new contest and goodbye

WENDY PRESIDENT OF ENCA

 

Wendy Costello 

President