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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6 days ago
LUPUS EUROPE

Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason we'd like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by International Alliance of Dermatology Patient Organizations - IADPO.

Taking part on this project is very easy! You will only need to take a short 10-15 min survey in English. The survey tests a new tool that measures the impact of your disease. Doing this will help measure and validate the very real and difficult challenges faced by dermatology patients globally.

You can find the survey and all the information about the project in this link: globalskin.org/research/about-phase-4
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Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason wed like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by International Alliance of Dermatology Patient Organizations  - IADPO. 

Taking part on this project is very easy! You will only need to take a short 10-15 min survey in English. The survey tests a new tool that measures the impact of your disease. Doing this will help measure and validate the very real and difficult challenges faced by dermatology patients globally.

You can find the survey and all the information about the project in this link: https://globalskin.org/research/about-phase-4Image attachmentImage attachment
1 week ago
LUPUS EUROPE

Today is #WorldSclerodermaDay! 🌻

A day that brings together scleroderma communities from around the world to raise awareness and show solidarity with those facing the challenges of this rare, invisible and disabling disease. On this special day, we want to reaffirm that we're here to support you, encourage you and help you find the light bloom.

#BloomWithScleroderma today and always.

Read more about our campaign 👉
fesca-scleroderma.eu/wsd2022/?utm_source=facebook&utm_medium=facebook-feed&utm_campaign=organic-c...
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2 weeks ago
LUPUS EUROPE

LEAF is an online tool developed by Dr. Laurent Arnaud whose objective is to assess fatigue and give some personalised advice on how we could manage it.

Fatigue could be affected by stress, low sleep quality or pain. The LEAF questionnaire will assess your pain based on your responses regarding depression, pain, stress, anxiety and quality of sleep. Once the data is analyzed, LEAF will give you some hints that could help improve fatigue.

The questionnaire is in English, French and Spanish and the answers will help understand more about fatigue! You can do LEAF even if you don’t have an autoimmune disease.

iamfatigued.limequery.org/584745?lang=en
... See MoreSee Less

LEAF is an online tool developed by Dr. Laurent Arnaud whose objective is to assess fatigue and give some personalised advice on how we could manage it. 

Fatigue could be affected by stress, low sleep quality or pain. The LEAF questionnaire will assess your pain based on your responses regarding depression, pain, stress, anxiety and quality of sleep. Once the data is analyzed, LEAF will give you some hints that could help improve fatigue. 

The questionnaire is in English, French and Spanish and the answers will help understand more about fatigue! You can do LEAF even if you don’t have an autoimmune disease.

https://iamfatigued.limequery.org/584745?lang=en

Comment on Facebook

This looks really interesting, thanks. Fatigue is probably the worst aspect of having Lupus. Anything that helps manage that has to be a bonus

Such an endeavour to struggle !

2 weeks ago
LUPUS EUROPE

The 33rd Lupus Europe Annual Convention was held in person and online this year! After a General Assembly this past Sunday and a Board Meeting yesterday we are very happy to present you with the new Board of Directors of Lupus Europe!

We would like to take this opportunity to also offer our sincere congratulations to our newest member of the Board, elected on Sunday! A warm welcome to new Board Member, Dalila Tremarias!
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The 33rd Lupus Europe Annual Convention was held in person and online this year! After a General Assembly this past Sunday and a Board Meeting yesterday we are very happy to present you with the new Board of Directors of Lupus Europe!

We would like to take this opportunity to also offer our sincere congratulations to our newest member of the Board, elected on Sunday! A warm welcome to new Board Member, Dalila Tremarias!

Comment on Facebook

Congratulations Dalila Tremarias! Over the moon for you. They’re lucky to have you on board. 💜 👏

Congratulations Dalila 💜

Well done Dalila - so proud of you xx

Well done all of you and thanks .I am amy somers mum

I'm so proud of you!@Amy Somers.miss you much x

Congrats Dalila!!👍😁

What an amazing group of lupies.

Congratulations ❤️

Felicidades dalila

Dalilavan harte gefeliciteerd

Felicitaciones

🌹🌹🌹👍👋👋👋👋

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