LUPUS EUROPE – PATIENTS ADVISORY NETWORK

People with lupus need new and better treatments to improve their long-term prognoses and their quality of life. We need a better understanding of the disease and its medical, social and psychological impact, so that effective plans can be put in place. LUPUS EUROPE strongly believes that such research can only take place with the active participation of people with lupus, and of patient organisations.

To understand how we can best progress, LUPUS EUROPE organised a workshop session with Doctors and Scientists engaged in research, with other patient groups and non-profit organisations actively engaged in this area; and with representatives of the pharmaceutical industry engaged in Lupus related research. In addition, it gathered input from its members through a survey. These various initiatives have converged to the conclusion that to achieve the most meaningful results, LUPUS EUROPE should establish a “Patient Advisory” Group as defined below.

The Mission

The Patient Advisory Network (PAN) is a team of 20 to 25 trained and energised experienced patients, living with lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus, including EULAR task forces, SLEuro initiatives and ERN Research. They structurally connect the patient community to the scientific community. They provide prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plans.

 

If you are interested in working as part of  LUPUS EUROPE PATIENT ADVISORY NETWORK, or have projects that would benefit from our support, contact LUPUS EUROPE’s secretariat (secretariat@lupus-europe.org)

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14 hours ago
LUPUS EUROPE

Did you miss our joint webinar with ERN RECONNET?

Among other things, Prof. Laurent Arnaud talked about the new EULAR recommendations for the management of #lupus and the main changes that have been introduced.

Watch it and tell us what you think about them!

Did you know that our Chair, Jeanette Andersen was part of the task force?
😃

EULAR 2023 Debrief – for people living with lupus LIVE LINK
... See MoreSee Less

Did you miss our joint webinar with ERN RECONNET?

Among other things, Prof. Laurent Arnaud talked about the new EULAR  recommendations for the management of #lupus and the main changes that have been introduced.

Watch it and tell us what you think about them!  

Did you know that our Chair, Jeanette Andersen was part of the task force? 
😃

https://www.facebook.com/LupusEurope/videos/1464013921069862
15 hours ago
LUPUS EUROPE

Today is #WORLDAPSDAY, an autoimmune disease that affects 20-30% of people with #lupus.

#APS can cause:

- Excessive blood clotting.
- Certain pregnancy complications.
Pregnancy planning and close monitoring are key to reduce the risk in pregnancy in patients with APS.

#pregnancy #planning #SLE #awareness #APSAwareness
... See MoreSee Less

Today is #WorldAPSDay, an autoimmune disease that affects 20-30% of people with #lupus.

#APS can cause:

- Excessive blood clotting.
- Certain pregnancy complications.
Pregnancy planning and close monitoring are key to reduce the risk in pregnancy in patients with APS.

#pregnancy #planning #SLE #awareness #apsawareness
2 days ago
LUPUS EUROPE

Did you know? We presented 6️⃣ abstracts for #EULAR2023, and all 6️⃣ of them were accepted!

We also...

🙌 Had 2️⃣ oral presentations.
🙌 3️⃣ posters.
🙌 Alain Cornet was one of the abstract award winners.
🙌 Zoe presented in the scientific abstract plenary session.

Watch the interview Dr. Anthony Psarras made with Alain Cornet in Milan!

youtu.be/lLNJmCJ7iqk
... See MoreSee Less

Did you know? We presented 6️⃣ abstracts for #EULAR2023, and all 6️⃣ of them were accepted!

We also...

🙌 Had 2️⃣ oral presentations.
🙌  3️⃣ posters.
🙌 Alain Cornet was one of the abstract award winners.
🙌 Zoe presented in the scientific abstract plenary session.

Watch the interview Dr. Anthony Psarras made with Alain Cornet in Milan! 

https://youtu.be/lLNJmCJ7iqk
3 days ago
LUPUS EUROPE

... See MoreSee Less

Comment on Facebook

Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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