Convention registration reminder

Has your member group registered for the LUPUS EUROPE convention yet? Remember that the deadline for special conditions is 15th June 2016. The convention will take place in the beautiful historical city of Würzburg, Germany from 28th September – 2nd October 2016. It is also an important occasion for our hosts, the German Lupus association, who are […]

Reminder EPF survey on quality healthcare

What does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016 Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care. Please note […]

World Lupus Day in France

This week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations. AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here. Among other activities planned […]

A mother’s story

For World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech. When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia. But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: […]

Kikka’s story

My Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I […]

Katharine’s story

When it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather […]

Anna’s story

I met my Lupus on a sunny day of April 2003 when I was 23 years old. A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was […]

Yvonne’s story

  My story – by Yvonne from the Netherlands On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be […]

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
5 days ago
LUPUS EUROPE

We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Gaia VonÖrn from the Reumatikerförbundet, who has told us so many interesting things. Read about the unmet needs in Sweden:

"People must be able to access specialist care for their lupus in order to get their disease under good control. We need a lot more awareness about lupus in Sweden. In our experience, GPs can have poor knowledge and awareness of lupus, and this can cause serious delays in referrals to rheumatology clinics for initial consults. Patients often have very late diagnoses and can develop complications from their lupus".

"We believe it is important for patients to have access to pain specialists. Many lupus patients suffer from chronic pain and it can take a very long time to access pain clinics. Pain specialists are crucial in educating patients on pain management and the options available to them and to follow up people to ensure their pain is well managed".

Tell us! Where do you live? Do you think these unmet needs are common in European countries?

You can read more about the Swedish Rheumatism Association in our blog:
... See MoreSee Less

We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Gaia VonÖrn from the Reumatikerförbundet, who has told us so many interesting things. Read about the unmet needs in Sweden: 

People must be able to access specialist care for their lupus in order to get their disease under good control. We need a lot more awareness about lupus in Sweden. In our experience, GPs can have poor knowledge and awareness of lupus, and this can cause serious delays in referrals to rheumatology clinics for initial consults. Patients often have very late diagnoses and can develop complications from their lupus.

We believe it is important for patients to have access to pain specialists. Many lupus patients suffer from chronic pain and it can take a very long time to access pain clinics. Pain specialists are crucial in educating patients on pain management and the options available to them and to follow up people to ensure their pain is well managed.  

Tell us! Where do you live? Do you think these unmet needs are common in European countries?

You can read more about the Swedish Rheumatism Association in our blog:
6 days ago
LUPUS EUROPE

Thanks to the hard work of investigators and a more active participation of patients in investigation we know more about lupus, its pathogenesis and management. However, we still have many questions without answer.

What is the one for which you most wish there was an answer?
#Lupus100. In collaboration with ERN RECONNET, Katana Santé and Fai2r
... See MoreSee Less

Thanks to the hard work of investigators and a more active participation of patients in investigation we know more about lupus, its pathogenesis and management. However, we still have many questions without answer.

What is the one for which you most wish there was an answer?
#lupus100. In collaboration with ERN RECONNET, Katana Santé and Fai2r

Comment on Facebook

What are the chances of finding a cure for lupus today compared to 20 years ago? Still the same, better, surprises ahead?

Can we hope in a solution for the extreme fatigue we feel after our very good doctors manage to put us in remission?

6 days ago
LUPUS EUROPE

The “Living with lupus in 2020” survey has highlighted the need for change in access for #lupus patients. That is why we chose "Access" as the theme of our 2022 #LupusConvention.

What is your experience in regard to acces?

You can read the full convention report here:

www.lupus-europe.org/wp-content/uploads/2022/09/Convention-Report-2022-1-1.pdf
... See MoreSee Less

The “Living with lupus in 2020” survey has highlighted the need for change in access for #lupus patients. That is why we chose Access as the theme of our 2022 #LupusConvention. 

What is your experience in regard to acces?

You can read the full convention report here:
  
https://www.lupus-europe.org/wp-content/uploads/2022/09/Convention-Report-2022-1-1.pdf