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

CHILD IN THE CENTER        

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)

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

 

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

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