Paediatric rheumatology European association shares recommendations on Covid-19 vaccines for young people with rheumatic diseases.

Visit the link for recommendations.

Register for the PReS e-Congress 2020 as an ENCA delegate

You are invited to attend the PReS e-Congress 2020 - the 26th European Paediatric Rheumatology Congress. Due to the COVID-19 pandemic, the Congress will be virtual, taking place between Wednesday 23 September 2020 and Friday 25 September 2020.

If you are a patient, parent, carer or representative of a patient and/or parent organisation (referred to as an ENCA member), then registration to the PReS e-Congress is free of charge. Registration includes access to all three days of live streamed sessions, networking opportunities, ePoster sessions and virtual exhibits. Access to all session recordings after the e-Congress will also be available for three months.

In order to register as an ENCA delegate, you are invited to complete the electronic registration form, via this link: https://enca.us4.list-manage.com/track/click?u=d5f408c63726a802fd0b4276c&id=b855ddce53&e=3d089716aa 

This form is managed by the ENCA Board. This form should be completed by each individual wishing to register. The deadline to register as an ENCA delegate is Friday 31 July 2020 at 23:59 CEST. After this date, ENCA will share your details with MCI, who manage the organisation of the e-Congress on behalf of PReS, the Paediatric Rheumatology European Society, so that you can be registered to receive access to the e-Congress. If you have any queries, please do not hesitate to contact the ENCA Board by emailing contact@enca.org.

Although 2020 will be a very different experience to previous events involving PReS and ENCA, we look forward to virtually meeting colleagues old and new in September. This will be a fantastic opportunity for learning, networking and building even stronger partnerships to benefit children, young people and families living with arthritis and autoinflammatory diseases throughout Europe and beyond.

SHARE YOUR MATERIALS TO EXHIBIT IN THE VIRTUAL ENCA BOOTH
In order to raise the profile of the organisation you represent, volunteer with, or work for, ENCA kindly ask for you to share some materials in advance of the PReS e-Congress 2020. These will be used in ENCA's virtual booth at the e-Congress and on social media.

Before Friday 28 August 2020 at 17:30 CEST, please can you email the following to contact@enca.org:

1. Your individual biography (no more than 300 words, photograph optional)
2. Your organisation's logo (in .png or .jpeg format)
3. A brief description about your organisation (no more than 300 words)

The following is optional:
A short promotional video (no longer than 3 minutes) about your organisation, sent via WeTransfer https://wetransfer.com. To do so, visit the WeTransfer website, add your video, and email to contact@enca.org. Please ensure you are sending the original video, not a website or YouTube link.  

The following languages are now available for the survey :

• Albanian - Survey for adults - Sondazh për të rriturit
• Dutch: Survey for adults - Enquete voor volwassenen
• Dutch: Survey for children - Enquete voor kinderen
• English: Survey for adults
• English: Survey for children
• Greek: Survey for adults - Ερωτηματολόγιο για ενήλικες
• Greek: Survey for children - Ερωτηματολόγιο για παιδιά
• Hebrew: Survey for children - לחצו כאן כדי לענות על השאלון להורים לילדים ומתבגרים
• Hebrew: Survey for adults - לחצו כאן כדי לענות על השאלון למבוגרים.
• Italian: Survey for adults - Sondaggio per adulti
• Italian: Survey for children - Sondaggio per bambini
• Portuguese: Survey for adults - Adulta/o
• Portuguese: Survey for children - Crianças
• Russian: Survey for adults - Опрос для взрослых
• Russian: Survey for children - Опрос для детей
• Swedish: Survey for children - Undersökning för barn

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

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

Save the date, 18^th of March 2020 for WOrld young Rheumatic Diseases Day (WORD day) organised by ENCA and PReS.

Check the dedicated website for more information.

 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

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 

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 

Good morning, I am delighted to contact you to save the date, 18^th 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

PAIN AND FATIGUE – LIVE WITH IT

THURSDAY, 6.9.2018 

FRIDAY, 7.9.2018  

Click here to view the programme booklet for ENCA Lisbon.

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

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

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

View the updated programme

View the programme

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

View the Meeting Minutes (members only).

View presentations

Photos from the meeting: 

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

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