ENCA news

word

Good morning, I am delighted to contact you to save the date, 18th of March 2018 for WOrld young Rheumatic Diseases Day (WORD day). We hope that you can help us to:

 

SPREAD THE WORD THAT CHILDREN AND YOUNG PEOPLE GET RHEUMATIC DISEASES TOO

This will be the first international awareness day for children and young adults living with rheumatic diseases. We would like to see a national committee in each country to coordinate this event and maybe one of your national committee could send me their phone no and we could do an international whatsapp group.

We are preparing and will be contact with you again in the near future with promotional material and a WOrld young Rheumatic Diseases Day awareness video but for now I want to give you some ideas on how to celebrate the day and hopefully you have ideas of your own!

  • Contact your local paediatric rheumatology centre and see if you can celebrate the day together.
  • Contact your local and national media, radio, newspapers and television and ask them for their help to raise awareness, maybe they could interview one of your families or play our promotional video. This type of activity takes time to organise so it is worth starting soon!
  • Maybe one of your young adults could write a blog on their life with a rheumatic disease, or a parent of a child living with a rheumatic disease could do a blog or video we could all share on social media on the day.
  • Maybe you could help to organise an information / training event around this date and invite trainee doctors, nurses, physiotherapists and occupational therapists to help them better understand rheumatic diseases, as early intervention is the key to better outcomes for our children.

We are open to all ideas and are very excited to be doing this together. Please contact us with any ideas you may have or any questions.

Eve, Wendy, Yona, Sammy, Nico and Veerle

ENCA and PReS

Photos from Lisbon

Presentations Lisbon

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 Egert), summary of last year (ENCA) - the best practices, changes (Wendy Costello),

The winner of the contest fun with JIA : Introduction of our next project: World young rheumatic disease day

ENCA board

ENCA presentation - Wendy Costello

 

 

Lejla from Slovenia (Wendy Costello)

9.30– 10.00

Working groups – “World caffé” : 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 caffé» .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

LIRE – Victoria Romero Pazos (Spain)

 

12.30 – 14.00

Lunch

 

14.00 – 14.30

School problems all over the Europe and solutions

School problems - 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 
  • Patient`s pain and fatigue perspective
  • Parents’s  pain and fatigue perspective

 

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

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)

FRIDAY, 7.9.2018  

9.00 – 9.10

Welcome again, summary of Friday + PreS

ENCA board

9.10 – 9.55

Invited speaker:

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 (Netherlands)
  2. Chloe Scarlett Haines – NRAS (England) winner of PARE school project
  3. Rebecca Arvigo, (Italy)
    Siblings are suffering too !
  4. Line Lund – patient, (Denmark)
  5. Rein Kloks (Netherlands) – Siblings are suffering too !

12.30 – 14.00

Lunch with Novartis

Rare autoinflammatory council
Introduction of AID Hero
Barbara Bori (Novartis)

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

 

Lisbon programme booklet ENCA

Click here to view the programme booklet for ENCA Lisbon.

Update of ENCA program during the september PRES conference in Lisbon

ENCA CONFERENCE LISBON  - 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 (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)

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 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

Version August 15,  2018

Lejla from Slovenia is the winner of the "Fun with JIA" challenge!

Here is her video . She is invited to come to the september meeting in Lisbon.

Fun with JIA 2018 Update - videos

We have received 8 videos, you may see them here - they are under evaluation.

Update of ENCA program during the september PRES conference in Lisbon

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

 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 - (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

version July 4, 2018

The "Fun with JIA 2018" deadline is extended up to July 31

 

Fun with JIA 2018!

For the second year, please share this announcement with your children."FUN WITH JIA 2018" !! 
ENCA is challenging all kids with JIA !!! (Or any Autoimmune /Auto-Inflammatory disease) 
Are you between 6 and 18 years old? 
Then read about this challenge here!!
Who dares to take this challenge???

Spring meeting of the ENCA board in Amsterdam

 

Report from the 17th ENCA meeting in Athens

View the report from the 17th ENCA meeting in Athens.

17th ENCA meeting in Athens - Presentations

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

 

Update of the ENCA meeting in Athens

Videos submitted to the "Fun with JIA” challenge

 
NOTE: There may have been videos lost in the emails; you may still send or resend yours at secretary@enca.org and  secretary.enca@hotmail.com.

Update of the ENCA meeting in Athens

Survey on SJIA

For dutch speaking people, participate to a survey on SJIA.

Fun with JIA announcement

Dear Parents, please share this announcement with your children."FUN WITH JIA" !! 
ENCA is challenging all kids with JIA !!! (Or any Autoimmune /Auto-Inflammatory disease) 
Are you between 6 and 18 years old? 
Then read about this challenge here!!
Who dares to take this challenge???

ENCA board meeting in Amsterdam

View the Meeting Minutes (members only).

16th ENCA meeting in Genoa

View presentations

Photos from the meeting: 

Participation to the EULAR conference in London

Participation to the final SHARE conference in Zeist (Netherlands)

Read more about this in SHARE The Final Conference SAVE THE DATE FLYER.