March 2016 - Lupus Europe

World Arthritis Day 2016

This year, we want World Arthritis Day (WAD) to be more powerful than ever! To do this we are asking people to share their stories about how they have taken action to live their life to the fullest with a rheumatic and musculoskeletal disease (RMD) in order to provide greater education to people both within the RMD community […]

The LUPUS EUROPE Patient Panel is underway

It is starting! After intense preparation, the second LUPUS EUROPE patient panel is now taking place in Brussels. From Friday to Sunday, nine patients from all over Europe will be discussing the theme of living with lupus, with a specific focus on treatment day after day. Several focus groups and workshops have been scheduled, and […]

Quality of healthcare?

What does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016. The survey is aimed at patient representatives: primarily individual patients, their family members or informal carers, and patient organisation representatives across the EU. You do not need in-depth knowledge or experience on quality of care to complete the survey! There […]

Introduction from a new board member

In September, during the LUPUS EUROPE convention, we were delighted to welcome Jeanette Andersen to the board. She has written a little introduction for those who don’t already know her from her work in LUPUS EUROPE and Young PARE. “I was diagnosed with SLE in 2011, although I had had symptoms of the disease since […]

The EUPATI toolkit has been launched

A Toolbox of presentations, videos, articles and other resources on patients’ involvement in development of new drugs for treatment was launched on January 27th. The EPF flagship project, EUPATI (the European Patient Academy on Therapeutic Innovation), has lanuched its Toolbox in 7 languages – read more on what fruits this will bring to patients and the research and regulatory […]

EPF Regional Advocacy Seminar

Do you have members in Belgium, the Netherlands, Luxembourg or Germany? This year’s EPF Regional Advocacy Seminar is open to patient representatives from these countries. Make sure you share this opportunity with them! This year’s Seminar is entitled “Getting the patients’ message across to the national and European level”. Participants will take part in […]

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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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Not succeeding to send an email for registration. I would like to participate. Thanks

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Month: March 2016