Today is World Arthritis Day. A day being honoured by The EULAR Conference on reducing the burden of chronic diseases in the workplace for people with RMDs. The conference is focusing on identifying and discussing relevant issues related to the working environment and how to move forwards.

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The conference was opened by EULAR president Prof. Gerd R. Burmester, who addressed the issue of people with chronic conditions being a burden on society. The question to ask is “Do we need new policies for better working conditions and the retention of ill people at work?” In order to answer the question, we first have to ask an additional question: “How well is Europe doing in preventing musculoskeletal diseases in the workplace and facilitating people with RMDs staying in work? What else needs to be done?”

After the opening session Laurène Souchet, policy Officer at EPF, talked about the main challenges in health and safety at work for people with chronic conditions. Dr. Rikke Helene Moe, a physical Therapist and researcher at National Advisory Unit on Rehabilitation in Rheumatology in Norway told us, that “Work is good”! She pointed out, that studies have shown how preventive strategies, such a healthy lifestyle and maintaining a job, can help improve the clinical impact of RMDs.

Antonio Cammarota, Head of the OSH Committees and International Relations Team, DG Employment and Social Affairs, European Commission spoke on how the EU intends to reduce the burden of RMDs and other chronic diseases in the workplace through legislation and policy initiative developments.

Lastly before participants broke off into workshops, Marious Coloumas, EULAR Vice-President representing People with Arthritis/Rheumatism in Europe (PARE) gave the patients´ point of view, when it comes to preventing RMDs and including people with RMDs in the workplace.

Participants were then divided into the three different workshops:

  1.  Primary, secondary and tertiary prevention of RMDs in the workplace: What legislation and policy initiatives do we need?
  1. Dealing with RMDs in the workplace: How to improve access to occupational health professionals and therapists?
  1. How to facilitate the retention of people with RMDs in the workplace as well as the return to work after sick leave?

Possible answers to these questions were then presented on slides.

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Before closing today’s conference, a panel debate was held on the subject: Do we need better EU legislation to reduce the burden of RMDs in the work place?

On the panel were:

Biljana Borzan (Member of the European Parliament) | Antonio Cammarota (Advisory Committee on Safety and Health at workplace, DG Employment and Social Affairs, European Commission) | William Cockburn (Head of the Prevention and Research Unit, European Agency for Safety and Health at Work) | Marina Monaco (Advisor, European Trade Union Confederation) | Patrick Gibbels (European Small Business Alliance), tbc | Prof. Anthony Woolf (Universities of Exeter and Plymouth & EULAR) and as a moderator: Cathy Smith (Journalist).

The main outcome of the debate was that new policies/laws in the workplace may not actually be needed. Perhaps it is enough to make sure, that existing laws are implemented more rigorously by each EU member state.

All of today’s results will be communicated directly to EU policy makers to improve conditions at the European level.

Jeanette Andersen

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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
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#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

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#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

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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/
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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