About Jeanette

Jeanette Andersen is 43 years old, lives in Denmark and has a Master’s degree in German and Philosophy from the University of Copenhagen. In 2011 she was diagnosed with SLE, which (in combination with a lot of comorbidities) forced her to go into early retirement. Since then, she has immersed herself in the role of a volunteer in the area of rheumatology with a special focus on patient engagement in clinical research.

She is the Chair of Lupus Europe, a EUPATI trained patient expert on medicines Research & Development and the leader of the Lupus Europe Patient Advisory Network. She is also a patient representative (or e-PAG) and a Steering Committee Member in ERN ReCONNET as well as leader in the Danish Lupus group underneath Gigtforeningen (the Danish Rheumatism Association). She is a EULAR PARE Committee Member and Leader of the Editorial Board and Edgar Stene Prize working groups. She also sits on the ACTion Council on patient engagement in rheumatology research.

She has developed an exercise programme for lupus patients, that has been endorsed by both ERN and EULAR and at present she has a focus on developing educational materials on better communication between doctors and patients.

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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:
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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
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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
LUPUS EUROPE Uniting people with Lupus throughout Europe
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