All around the world, scientists, academics, Doctors are looking for better treatments for people living with lupus. The complexity of the disease makes this search difficult, but many promising tracks are pursued with thousands of patients involved in clinical trials. The research is taking place in locations all over the world, maybe also close to your home.

Whether you just have an intellectual interest for the topic and would like to see what research is taking place where, or would like to become personally involved by enrolling in a clinical trial, here are links that will help you find the most current information. Our search link will direct you either to Clinicaltrials.gov (the global database of all clinical trials around the world), or to antidote.match, a platform identifying, based on few questions, which clinical trials are taking place near your home  for your condition

Lupus Clinical Research all around the world

Reach directly the active lupus trials from clinical trials.gov and be amazed by the quantity of on going research

Systemic Lupus Clinical trials near your home

If you want to find a clinical trial near you and have SYSTEMIC Lupus Erythematosus

Lupus Nephritis Clinical trials near your home

If you want to find a clinical trial near you and have LUPUS NEPHRITIS (Kidneys affected by systemic lupus)

Cutaneous Lupus Clinical trials near your home

If you want to find a clinical trial near you and have CUTANEOUS Lupus erythematosus

We hope the above links will be of use to you. LUPUS EUROPE has done its best to avoid any commercial bias in the data presented using the above links. Making the decision to participate in a clinical trial is your personal choice, to be made together with your trusted doctor. If you want to know more about clinical trials, we recommend you click on the link below. This will take you to EUPATI’s “An Introduction to Clinical Research” page where you can watch a short video that explains the essentials of a clinical trial:

https://toolbox.eupati.eu/resources/an-introduction-to-clinical-research/ 

You can also watch the following video where Jeanette Andersen, Chair of Lupus Europe and EUPATI fellow, and Marta Mosca, Coordinator of the ERN ReCONNET and Associate Professor in Rheumatology at the University of Pisa, discuss lupus, how patients can contribute to research and clinical trials and much more:

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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

www.youtube.com/watch?v=7J1oTfoIOGw
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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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