- 24.03.2020
Join the European patient registry - COVID-19
As part of the Global Rheumatology Alliance, we have built a patient registry so we can understand how the coronavirus affects people with rheumatic, autoimmune and autoinflammatory diseases. This will help doctors and healthcare workers across the world in treating patients with COVID-19, especially people who have a medical condition.
We need your help. If you are an adult or child with a rheumatic, autoimmune or autoinflammatory condition such as RA, JIA, Lupus, SLE, CAPS, Stills, CRMO or any other, please join the registry. It is also open to siblings and family members (regardless of whether they have an underlying health condition) so that we develop a good understanding of how the virus affects people differently.
Visit www.jarproject.org/covid to sign up. You will fill in a short survey (either for you or your child) to join, and we will send you short follow-up surveys every week to understand how things have changed.
This project is being coordinated across Europe by ENCA, PReS, PARE, EULAR and JAR, with support from clinicians, researchers and patient support organisations throughout Europe and partners across the world in the Global Rheumatology Alliance.
Wendy and Saskya
- 16.03.2020
CORONAVIRUS
To all our members we are thinking of you all at this difficult and challenging time. Please read our PReS guidelines and we also share the EULAR recommendations. Please do not rely on social media for your information. Please contact your rheumatology team if you have any concerns at all.
https://www.pres.eu/news/newsstory.html?id=29
https://www.eular.org/eular_guidance_for_patients_covid19_outbreak.cfm
Wendy Costello
President ENCA
- 19.02.2020
2nd WORD day (World yOung Rheumatic Disease day)
Save the date, 18th of March 2020 for WOrld young Rheumatic Diseases Day (WORD day) organised by ENCA and PReS.
Check the dedicated website for more information.
- 24.09.2019
Vaccination survey
Do you have a child with a #rheumatic,#musculoskeletal and/or #autoinflammatory diseases?
If so, can you please complete a short survey?
#ENCA is looking at the topic of vaccination and information that is shared with you about this
topic ENCA hopes that you can help us with doing research in this area.
https://forms.gle/jo24hQFrFLvAHFm89
- 14.06.2019
EULAR 2019 in Madrid
ENCA was in Madrid for the european congress of rheumatology EULAR
This year it was coupled with the pediatric rheumatology congress PRES
Mirjam KEPIC, our president made a presentation during the congress and a speech
- 05.05.2019
ISSAID 2019 conference - Genoa (Italy)
The first ISSAID patient organisation meeting was well attended by many patient organisations from around the world, doctors and others. Everyone made new friends, shared insights and were engaged in the discussions after each session, that can be read in this summary.
Also, there was a joint patient organizations booth at ISSAID for the first time and a banner featuring logos from the participating patient organizations
This meeting and booth was organised by
Karen Durrant www.autoinflammatory.org
Paolo Calveri www.febbriperiodiche.it
Gabriele Bona www.amri.it
Saskya Angevare. www.enca.org/ www.kaisz.nl
The conference report can be found here
- 01.11.2018
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
- 28.10.2018
Photos from Lisbon
- 25.10.2018
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 |
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10.00 – 10.30 |
Coffee break |
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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 |
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14.00 – 14.30 |
School problems all over the Europe and solutions |
|
|
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 |
|
Jenny Hagger, physiotherapist, Scotland 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 |
|
|
10.00 – 10.30 |
Coffee break |
|
|
10.30 – 11.10 |
Invited speaker – CARRA (USA):
|
|
|
11.10 – 12.30 |
Patient stories- topics: pain and fatigue, school and siblings |
|
|
12.30 – 14.00 |
Lunch with Novartis |
Rare autoinflammatory council |
|
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 |
- 03.09.2018
Lisbon programme booklet ENCA
Click here to view the programme booklet for ENCA Lisbon.
- 15.08.2018
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 |
|
Jenny Hagger, physiotherapist, Scotland _________________ |
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:
|
VINCENT DELGAIZO (CARRA USA) |
|
11.10 – 12.30 |
PATIENT STORIES - topics: pain and fatigue, school and siblings
|
|
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12.30 – 14.00 |
LUNCH WITH NOVARTIS |
INTRODUCTION OF AID HERO WITH WENDY AND SASKYA |
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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
- 08.08.2018
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.
- 02.08.2018
Fun with JIA 2018 Update - videos
We have received 8 videos, you may see them here - they are under evaluation.
- 04.07.2018
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
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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
- 01.06.2018
The "Fun with JIA 2018" deadline is extended up to July 31
- 04.04.2018
Fun with JIA 2018!
Who dares to take this challenge???
- 25.02.2018
Spring meeting of the ENCA board in Amsterdam
- 17.11.2017
Report from the 17th ENCA meeting in Athens
View the report from the 17th ENCA meeting in Athens.
- 10.10.2017
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 |
|
|
10.30 – 11.00 |
Coffee break |
|
|
11.00 – 12.00 |
Introduction of ENCA members (associations): |
|
|
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 |
|
|
15.00 – 17.00 |
JOINT SESSION WITH PreS
|
Room No.: SKALKOTA HALL Wendy COSTELLO, president of ENCA (Ireland) Sarah DALTON (HPPR + parent) , UK
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) |
|
|
12.30 – 14.00 |
Lunch |
|
|
14.00 – 14.10 |
Voting |
Voting for ENCA board, Wendy COSTELLO |
|
14.10 – 15.00 |
Self management + pain management
|
Leader of the session: Wendy COSTELLO
Lizanne BENTVELSEN, occupational therapist (Netherlands)
Jeannette CAPPON, pediatric physical therapist, Netherlands
|
|
15.00 – 15.30 |
Doctor vs. Rheumatologist vs. Pediatric rheumatologist and vaccination |
|
|
15.30 – 16.00 |
Topics for next year |
Wendy COSTELLO – President of ENCA |
- 02.08.2017
Update of the ENCA meeting in Athens
- 17.07.2017
Videos submitted to the "Fun with JIA” challenge
- 03.07.2017
Update of the ENCA meeting in Athens
- 06.05.2017
Survey on SJIA
For dutch speaking people, participate to a survey on SJIA.
- 01.04.2017
Fun with JIA announcement
Who dares to take this challenge???
- 23.03.2017
ENCA board meeting in Amsterdam
View the Meeting Minutes (members only).
- 29.09.2016
16th ENCA meeting in Genoa
- 09.06.2016
Participation to the EULAR conference in London
- 26.10.2015
Participation to the final SHARE conference in Zeist (Netherlands)
Read more about this in SHARE The Final Conference SAVE THE DATE FLYER.
- 30.11.1999
ISSAID International congress report - Genoa (Italy)
The first ISSAID patient organisation meeting was well attended by many patient organisations from around the world, doctors and others. Everyone made new friends, shared insights and were engaged in the discussions after each session, that can be read in this summary.
Also, there was a joint patient organizations booth at ISSAID for the first time and a banner featuring logos from the participating patient organizations
This meeting and booth was organised by
Karen Durrant www.autoinflammatory.org
Paolo Calveri www.febbriperiodiche.it
Gabriele Bona www.amri.it
Saskya Angevare. www.enca.org/ www.kaisz.nl
The conference report can be found here