We are delighted to inform you about the launch of the 2019 Edgar Stene Prize Competition. At the Opening Plenary Session of the forthcoming European Congress of Rheumatology in Madrid, Spain, on 12 June 2019, the Edgar Stene Prize will be awarded to the winning essay on the topic:

“My ideal employer – Work without barriers for people with RMDs”

EULAR invites people with RMDs to write about their personal experiences. We all want to live life to the fullest and independently and work is an essential part of our life. Be it paid work, voluntary work or looking after the family and a household, this can be a challenge for people with RMDs. What measures, aids, attitudes by employers – this can also be the family, society or the organisation or institution you would like to volunteer for – can support people with RMDs to be able to work in their dream job, or look after a family – we want to hear from you this year what should your ideal employer offer to you to make your work more accessible and manageable – or if there is already something which is reality we want to hear your best practice examples!

As in the past, we encourage our national EULAR member organisations of PARE to organise national competitions for people with a rheumatic or musculoskeletal disease (minimum 18 years of age). Competitors should be invited to submit an essay not exceeding 2 pages (A4) in their own language to their national EULAR member organisation of PARE. The deadline for the national completion will be set individually by each national organisation. Anyone who would like to submit an essay should get in touch with their respective national EULAR member organisation for further information.

Each national jury should select and submit the best entry from their country (only one entry) by email to the EULAR Secretariat by 20 January 2019. A more detailed outline of the rules can be obtained by contacting the EULAR secretariat. Please note that these have to be fully adhered to, as applications which are not complete will not be accepted by the EULAR Secretariat.

A EULAR Jury will select the 2019 Stene Prize winner to be announced by 15 March 2019. The jury’s decision is incontestable. Information about the 2019 EULAR Jury will be posted in the coming months on www.eular.org

The Stene Prize winner will be invited to attend the Opening Plenary Session of the EULAR Congress in Madrid and is awarded a prize of € 1 000. EULAR provides the winner with travel to Madrid and hotel accommodation for up to 4 nights as well as with
an invitation to the EULAR Congress Gala Dinner. The second ranking essay will be awarded with € 700 and the third ranking essay with € 300.

Thank you so much in advance for supporting this exciting and important competition in your country. If we can help with any questions please do not hesitate to contact the EULAR secretariat. The 2019 Edgar Stene Prize Jury looks forward to receiving many
entries from all over Europe!

With kindest regards,

Nele Caeyers, Chair, EULAR Standing Committee of PARE
Dieter Wiek, Vice President, EULAR, representing PARE
Polina Pchelnikova, PARE Working Group Leader Edgar Stene Prize

rgb_eular_stene-prize_logo_2019

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

Today is rare disease day!

🚨 There are over 300 million people who live with a #RareDisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌.

Thank you for your support on this #rarediseaseday!

#ShareYourColours
... See MoreSee Less

Image attachment
Image attachment
Image attachment
Image attachment
Image attachment

#lupus is a #RareDisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #RareDisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

f.mtr.cool/iyctvzvvtj
... See MoreSee Less

#Lupus is a #RareDis

Today is #RareDiseaseDay!

And we have joined Rare Disease Day campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

www.youtube.com/watch?v=7J1oTfoIOGw
... See MoreSee Less

Today is #RareDiseas

😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/
... See MoreSee Less

LUPUS EUROPE Uniting people with Lupus throughout Europe
Send