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 2022 we had some incredible speakers, whose messages we wanted to share beyond the PReS conference itself. These can be found below.

Supporting children with regular injections

Catherine McCormack : Teddy bear therapy and other magic

Jasper Oprins : My story of living with Juvenile Idiopathic Arthritis

Norma O'Keeffe : Helping children and young people cope with injections

The importance of raising awareness

Ruth Colagiuri : The impact of raising awareness through politicians and community leaders

Yona & Tsipi Egert : Using resources to raise awareness of JIA in a child-friendly way

Felix Townsin : The importance of raising awareness for rare diseases

Patients with immune related diseases may be interested in getting tattoos, but may have questions.

ERN RITA have shared the recording of their webinar about this, which you can watch here - https://www.youtube.com/watch?v=wJU93fcx1Us

Content warning: some graphic images of skin reactions.

World Young Rheumatic Disease Day – WORD Day 2023

Dear Colleague,

We are writing to you on behalf of the WORD Day Committee.  

We are pleased to confirm that the annual World Young Rheumatic Diseases Day, or WORD Day, is being held on Saturday 18^th March 2023.

Last year we came together and spread awareness that young people are affected by rheumatic diseases across the world, and the impact this has on their lives. We were very pleased that our webinars were again well attended and supported by the international rheumatology community and were very successful. It was wonderful to see a huge variety of amazing events held across the globe arranged by patients, parents, charities, hospitals, health care professionals, doctors and nurses. It was particularly good to see many new organisations and countries join in and spread awareness for the first time. Thank you for making last year a big success!

We are now looking forward to WORD Day 2023!

We again need your support to get involved, help to spread awareness, arrange events and share the stories and experiences of our young people who live with a rheumatic disease. How you or your organisation decide to mark the day is very much down to you. We are very aware that every country, charity and organisation is unique and will have different levels of time and resources available. There is no right or wrong way to mark WORD Day and the day is for everyone to get involved in the way that suits them best.

Your charity, hospital and organisation can get involved and support the day in a number of ways…

One easy way for our charity partners and rheumatology colleagues to get involved is by being active on a variety of social media platforms. As in previous years, there will be an international social media campaign involving Twitter, Facebook, Instagram and TikTok. This could involve interaction with our Twitter, Facebook and Instagram pages or sharing individual stories online, uploading real life examples of the challenges faced by children and using our hashtag #WORDDay2023

Please follow our campaign and interact on social media when you can. Together as a community we can create a huge social media coverage around the globe, raising awareness and highlighting the difficulties all children diagnosed with life changing rheumatic conditions face across the world.

Following on from previous years we are planning two online webinar events with an international panel of young people, parents, doctors and healthcare professionals. Further details of these events will be shared soon along with how to register for each event.

Our WORD Day resources can be found on our website www.wordday.org – including downloadable posters, leaflets and information to help charities and groups explain the aim of the day and its message of awareness.

You may want to arrange your own charity events to mark the day maybe in person or online. These could include an awareness event, a family event to bring people together or anything else you feel spreads the message that young people get rheumatic diseases and the importance of awareness.

Remember to send us any photos that you may wish us to share on our own social media channels so we can see what is happening around the world.

Everyone (organisations, companies and individuals) who contributes to WORD Day 2023 can download the Ambassador’s badge from our website and then send us an email with their logo or picture and ask to be added to the list of ambassadors on www.wordday.org

We hope you and your organisation will get involved and join us to spread the message of WORD Day 2023.

Let us come together to raise awareness for everyone across the world who has to live their childhood whilst dealing with a rheumatic disease.

Many thanks for your help and support

The WORD Day Committee

ENCA is delighted to be holding our annual conference as part of the PReS 2022 Congress, taking place in Prague and online.

Our own ENCA sessions include

• The importance of raising awareness, at 11:00 CET on Thursday 22 September
• Learning to live with regular injections, at 11:00 CET on Friday 23 September

And our Roundtable discussion for ENCA Members on Wednesday 21 September at 17:30 CET.

We are also involved in many other sessions, representing the views and interests of patients and parents.

Keep an eye on our social channels and Member's Facebook group for updates throughout the conference.

If you are attending in person, make sure you come and say hello to the Board Members who are there!

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