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Following on from the workshop held during the Helsinki convention, LUPUS EUROPE organised a Patient panel, bringing together 10 people living with lupus, from 7 countries, to share their experience about “treatment”, with a view to help improving the quality of life of people living with lupus. The Panel was conducted through a series of interactive presentations, team discussions and working groups, and resulted in the drafting of 3 letters addressed respectively to: People living with lupus, Patient Organisations, and the medical community; suggesting how they can each help in their respective areas.

The key points highlighted during the two day event were:

“Treatment” is broad; it is both medicine based and non-drug based, and can be categorised in three ways – core, medical, and well being. Treatment can be defined as any product or activity that aims at improving quality of life for the person with lupus.

Access includes ease of contact with Health Care Practitioners and support services such as orthotics as well as availability of medicines.  The individual’s personal adherence can be reinforced or weakened by the relationship with the Health Care Practitioner.

Patients will take new medicine provided they understand the reasons why and the side effects; management of patient expectations in terms of medication (speed of noticeable effects) and relating to support staff are equally important for correct treatment compliance.

We noted a dual-faceted infusion experience, as viewed by the person with lupus; it can either be viewed as an experience which emphasises their own incapacity or one which they view as contributing to their long-term quality of life.

Patient Organisations have a critical role to play, creating a community, sharing reliable information, providing hope, raising awareness and advocating for lupus.

Please read the report available here (members only area). If you have forgotten your login or password to access the members’ section, send an email to secretariat@lupus-europe.org 

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6 days ago
LUPUS EUROPE

Do you have #lupus?

Are you 18-30 years old and a volunteer of your national lupus group or interested in volunteering? In that case, get in contact with us and join us for exciting opportunities to exchange ideas and have some fun!

Send an email to zoe@lupus-europe.com and we will tell you more …
... See MoreSee Less

Do you have #lupus?

Are you 18-30 years old and a volunteer of your national lupus group or interested in volunteering? In that case, get in contact with us and join us for exciting opportunities to exchange ideas and have some fun!

Send an email to zoe@lupus-europe.com and we will tell you more …
2 weeks ago
LUPUS EUROPE

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists!

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them!
... See MoreSee Less

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists! 

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them!Image attachment
3 weeks ago
LUPUS EUROPE

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us:
How has volunteering for a #lupus organisation helped change your life?
Amazing prize to be announced soon!
... See MoreSee Less

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us: 
How has volunteering for a #lupus organisation helped change your life? 
Amazing prize to be announced soon!
3 weeks ago
LUPUS EUROPE

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter?
Read all about it by going to
mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022
... See MoreSee Less

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter? 
Read all about it by going to
https://mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022

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Защо не се превеждат статийте за лупус

LUPUS EUROPE Uniting people with Lupus throughout Europe
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