The biggest date in the calendar for raising awareness of childhood rheumatic conditions is 18 March - WORD Day (World yOung Rheumatic Diseases day). The aim of WORD Day is to spread the word that young people get rheumatic diseases too, with the goal of encouraging early diagnosis of rheumatic diseases which can make a big difference to outcomes for children.

At ENCA we are passionate about making a difference and raising awareness. 

This year we invited ENCA Members to share a short video to remind everyone that 'Awareness is everything' and we collated them below.

PReS are the Paediatric Rheumatology Society for Europe, and they represent clinicians and researchers working in the field of childhood arthritis and autoinflammatory conditions across Europe and beyond. ENCA is proud to be part of the PReS family, and we host our annual conference as part of the PReS Congress.

In 2021 we had five incredible speakers, whose messages we wanted to share beyond the PReS conference itself. These can be found below.

Catherine Wright talks about uveitis from a patient's perspective.

Karen Durrant talks about building powerful patient-clinician partnerships: "The AutoInflammatory Alliance Story".

Wendy Costello talks about "How to win friends and influence people: Strategies to agitate and advocate for resourcing and supporting your service needs".

Natalie Billiard talks about the burden for the family of a child with a chronic rheumatic disease.

Luc, Jasmijn and Luca talk about a patient's perspective of living with an autoinflammatory disease.

Date: 11.03.2022

On behalf of the PReS, EMERGE and ENCA family, we condemn all forms of violence and war that affects innocents, children, young people, and families. We want you to know that we are with you in these extremely difficult days.

If you need help accessing medical care and treatment, you can reach out to the PReS organisation (connect.pres@gmail.com) and/or access the locations of specific paediatric rheumatology centres and Family Associations by following the relevant country flags on the PRINTO network site (https://www.printo.it/pediatric-rheumatology/), in order to make contact with local teams close to where you are or need support. 

We would like also to highlight the initiative of the ERN-RITA network. They also welcome all doctors, health professionals, families and patients with rheumatic diseases who are in need to contact them. Please reach out to Y.vanRooij-2@umcutrecht.nl or contact-rita@ern-net.eu and see https://ern-rita.org/ern-rita-message-about-the-war-in-ukraine/ for further information.

Заява PRES про конфлікт в Україні

Дата: 11.03.2022

Від імені сімей PRES, EMERGE та ENCA ми засуджуємо всі форми насильства та війни, які зачіпають невинних, дітей, молодих людей та сімей.  Ми хочемо, щоб ви знали, що ми з вами в ці надзвичайно важкі дні.

Якщо вам потрібна допомога в доступі до медичної допомоги та лікування, ви можете звернутися до організації PReS (connect.pres@gmail.com) та/або отримати доступ до розташування певних дитячих ревматологічних центрів та сімейних асоціацій, дотримуючись прапорів відповідних країн на PRINTO.  мережевий сайт (https://www.printo.it/pediatric-rheumatology/), щоб зв’язатися з місцевими командами, які знаходяться поблизу вас або вам потрібна підтримка.

Хочемо також виділити ініціативу мережі ERN-RITA.  Вони також запрошують усіх лікарів, медичних працівників, сімей та пацієнтів з ревматичними захворюваннями, які потребують зв’язку з ними.  Будь ласка, зв’яжіться з Y.vanRooij-2@umcutrecht.nl або contact-rita@ern-net.eu і перегляньте https://ern-rita.org/ern-rita-message-about-the-war-in-ukraine  / для подальшої інформації.

This information has also been published on the PReS website at https://www.pres.eu/news/newsstory.html?id=67 

We would like to welcome Jeanne Linneweever to the board of ENCA. Jeanne is the co-founder of Stichting Jeugdreuma te Lijf, which is an organisation raising money for research and patient to patient get togethers.

Jeanne is also a volunteer at the Jeugdreuma Verening Nederland (JVN). She joined the board of ENCA to help make a difference to the lives of children and their families. To raise awareness for Autoimmune and Auto-inflammatory diseases, to learn and to share information from around the world. Jeanne has a child who was diagnosed with JIA at the age of 5 years old and has witnessed first-hand, the daily challenges that children and their families go through.

 

We would also like to welcome Natalie Billiard to the Board of ENCA. Natalie is the Founder of Zoe’s Angels in QLD Australia and is committed to raising awareness and Funds for children diagnosed with Rheumatic and Musculoskeletal Diseases. Natalie is a passionate advocator for children with Auto Inflammatory conditions and JIA. Her organization runs camps for children with JIA and Family weekends focusing on those who are newly diagnosed. An information conference is held with a leading Rheumatologist and Allied Health specialists with a Q&A session for parents. Natalie is passionate about advocacy and has a strong relationship with the international SJIA Community. She is thrilled to be a board member for ENCA so that she can continue her advocacy for children and their families who, have been and continue to be, affected by Juvenile Rheumatic and Auto inflammatory conditions.

WORD Day is about raising awareness for young people and children diagnosed with Rheumatic diseases. We, at ENCA are as asking for your help to put together a video to show that we are all working together to support families and make a difference. The video is to be shared on ENCA’s Social media channels.

If you would like to be a part of a collective advocating campaign for WORD Day, we invite you to send us a video of yourself, your child with a Rheumatic condition, a sibling, friend, or family member saying “Awareness is everything” in English and in your own language (leaving a 5 second gap between each language, so that the footage can be used twice).

Once you are happy with your video, you can then send it to us at contact@enca.org, where we will put all the video’s together and upload them.

Please make sure you have permission from everyone in the video for you to share it with us. When you email us, please tell us which country or organisation you are from and we can add that to the video.

Please send us your videos by February 28th, so that we have time to formulate the final piece before WORD Day.

The New Covid-19 vaccines are approved by various health authorities for patients 5 years of age and older and are recommended for Paediatric Rheumatic patients.
PReS recommends that Paediatric Rheumatology patients should be vaccinated against Covid-19 using vaccines approved by relevant national health authorities for children in this age group.

It is advised to consult your Paediatric Rheumatologist to assess your disease activity and medication before vaccination.

For further details please visit PReS -- English: Guidelines and Recommendations

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