Welcome back to our blog series on National Member News!

 

We are very 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 organisation! We caught up with Andreas Panteli from Lupus Suisse, who talked to us about the great work the organisation is doing, the needs of lupus patients in Switzerland,  COVID19 and so much more!

 

How do you keep in touch with or have contact with your members?

 

We send our Lupus Magazine to around 550 of our members twice per year; from 2021 onwards, this will move to once a year. We send our members 5-6 e-mails and post letters per years. We also have workshops and conferences twice a year. This is an area we are looking to improve, so we can have faster communication with our members.

 

 

 

 

 

 

 

 

 

 

 

Photo of Magdalena from an article within the Lupus Suisse magazine sharing thoughts on seeing life in a positive way

 

Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting etc)?

 

Yes! We had our Annual General meeting on April 24th. We also had 2 doctor led webinars:

 

 

 

In 2020 we had no General assembly, doctors’ webinars or workshops

 

Has it been difficult to keep connected with your members during the Covid19 pandemic?

 

Yes, face-to-face interactions have not been possible. The French part of Switzerland tried to use Zoom, but this didn’t work very well due to technical and personal issues. WhatsApp and messages seem to have more been useful than voice or video interactions during the covid19 pandemic for our group.

 

Many regional sub-groups found it difficult to keep in touch, as lupus members preferred to stay away from gatherings and interactions.

 

          Photo from a past Lupus Suisse event 

 

 

Have there been any circumstances during the pandemic that changed the way of living with lupus?

 

 

 Lupus Suisse members preferred to stay away from gatherings. This was truer for lupus patients who are members of Lupus Suisse, than for people who were not lupus patients.

 

We observed that for newly diagnosed patients there was increased care, as recurring appointments were postponed during in the first lockdown. Care was more organised due to the strict appointment window. Caregivers had restricted access at the beginning, now this is back to normal.

 

 

 

Photo of Lerna –  from an article within the Lupus Suisse magazine sharing ideas & tips for how to cook healthy meals 

 

Has Digital Health improved or changed in your country?

 

Digital health has not changed in the country as a result of the pandemic.

PCR covid19 or lateral flow test results are sometimes sent via SMS or e-mail, there have been some issues with this however and some people had to revisit the test centre to get their results.

 

What would you most need as support in your country for lupus?

 

We are currently missing groups and meeting face to face; we would like to see group meetings coming back, activity increasing, face to face workshops returning and interactions resuming.

 

Diagnosis in Switzerland can take a long time and may not be accurate. We would like to see shorter times to diagnosis and increasing accuracy of diagnoses.

 

Doctors currently must frequently switch medicines to find the one that works best for the patient. We need this situation to be improved for patients; it would be better for patients if doctors could predict which medicine would work for what patient.

 

Is there anything you think Lupus Europe could help your organisation with?

 

Yes! Lupus Europe could help our organisation through exchanging ideas and resources and through involvement in clinical or other studies.

 

Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense?

 

Yes! We think there should be European collaboration on increasing funding for new therapies for lupus.

 

Are you aware of the Lupus Europe Member Capacity Building Program?

No!

 

Could you tell us a bit about a dream you have as a group?

  

We dream of bringing most lupus patients in Switzerland closer, of creating a community. We dream of lupus patients in Switzerland being offered the services they need to improve their social position and quality of life. We dream of being advocates and the patient voices for lupus patients in Switzerland. We want lupus patients to be able to have access to doctors they feel comfortable with; that they can choose their doctors. We dream of integrating healthcare professionals, creating a lupus network of healthcare professionals’ network with specialists like rheumatologists, immunologists et cetera that all lupus patients in Switzerland will be able to access. 

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7 days ago
LUPUS EUROPE

We have exciting news!!!

Lupus Europe keeps growing! Sara Badreh has now joined our team as the Patient Advisory Network (PAN) coordinator!
We are very excited to be working with Sara; you can read more about her in our newsflash!

What is the PAN?

At LUPUS EUROPE we believe that patients have great potential to be an added value in research and development. That's why we invest in training and have created our PAN: trained patients involved in research projects with organisations like EULAR, the European SLE Society and ERN Reconnet.

The PAN is formed by 25-30 trained and energised patients, experienced in 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. They also had an active role in #LUPUS2022!

The PAN also connects the patient community to the scientific community by providing prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plan

Do you want to see what it is like to be part of the PAN? In this video, Francesca shares her insight

youtu.be/eJtGDtL9Ngg

Do you want to be part of this amazing team?

If the answer is "YES”, e-mail zoe@lupus-europe.org and find out more about it. No previous knowledge needed!

Don't miss our Newsflash, where our Chair, Jeanette Andersen, introduces Sara Badreh, talks about her background and her role in Lupus Europe.
Welcome to the team Sara!

mailchi.mp/lupus-europe.org/lupus-europe-newsletter-january-2023
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1 week ago
LUPUS EUROPE

Remember!

Our #kicklupus competition is running! Get your chance to attend our #lupusconvention and see firsthand all that we are doing for the European #lupus community!

All you have to do is tell us how volunteering for a lupus organisation has helped you changed your life. Send your testimonial (drawing, short/long text, song... any format is valid!) to zoe@lupus-europe.org.

As our Chair, Jeanette Andersen says, you can do it in your own language!
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1 week ago
LUPUS EUROPE

Comorbidity occurs when a person has more than one disease or condition at the same time. 2 of the most frequent comorbidities in #SLE are cardiovascular diseases and infection.
Prevention is key.

As per Dr. Angela Tincani says, "don't be worried because you have a higher risk than the general population. Take action to prevent it because there are several effective strategies:
- Stop smoking
- Have a healthy diet
- Do exercise
- Follow what your Dr. says.

Learn more about prevention and lupus here:

youtu.be/l10LsKDDkuY
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2 weeks ago
LUPUS EUROPE

Remember that next Wednesday, 18th January, at 17:00 CET (i.e. Paris time), we will be able to learn the latest data on #fatigue in #SLE thanks to Prof. Arnaud and Lou Kawka.

Don't miss this amazing ERN RECONNET webinar and register now!

us02web.zoom.us/webinar/register/WN_s-I4UVxsTW-eJd3bKPLvSg
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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