CIB-Liga vzw

12/11/2025

"I have three pieces of advice for you: keep warm, keep warm, and keep warm." 🌡️

This is what Monica, Vice-Chair of the Swedish Rheumatism Association for Systemic Sclerosis, was told by her doctor when she was diagnosed with .

As you can see, temperature is a big part of the puzzle when it comes to managing physical symptoms. 🧩

In winter, when temperatures drop, it's especially important to:

➡️ Improve your circulation before getting out of bed with a heated blanket or warming pad

➡️ Take frequent breaks to move around if you're sitting for long periods of time, e.g. at a desk

➡️ Layer up with thicker sleepwear or thermal clothing to maintain warmth throughout the night

What do you change about your scleroderma care in colder seasons? 🌻

11/11/2025

Aan onze leden, onze raad van bestuur heeft tot haar spijt moeten besluiten tot een verhoging van het lidgeld. Het lidgeld van 2026 zal €30 bedragen. (Voor verzendingen naar het buitenland €35.) Lidgeld dat vanaf nu wordt betaald is geldig tot en met 31/12/2026. Graag storten op rekeningnummer BE83 7895 4525 6115 met vermelding lidgeld 2026 en jullie naam en adres. Ook graag een telefoonnummer ajb. We willen in de toekomst een nauwer contact met onze leden.
We hopen op jullie steun te kunnen rekenen voor ons voortbestaan!
Alvast bedankt.

09/11/2025

Heb jij dat soms ook: je onderzoeksresultaten zijn goed, je arts is tevreden over het verloop van je ziekte, maar zelf voel je je uitgeput, heb je nog pijn en voelt het helemaal niet alsof je ziekte onder controle is.
Hoe dat kan en hoe je dat best aanpakt, vertelt onderzoeker Elias De Meyst (UZ Leuven) op het ReumaCafé van zaterdag 29 november in Hasselt.
Iedereen is welkom, deelname is gratis. Meer info en inschrijven kan hier 👉https://reumanet.be/content/reumacafe-hasselt

09/11/2025

📣Living with systemic sclerosis (scleroderma)?📣

Have you experienced faecal incontinence or bowel accidents?

You’re *not alone* — and your voice matters.

This anonymous survey aims to understand the real impact of faecal incontinence and the support people need most.

🧩 Open to adults (18+) with systemic sclerosis who have had these symptoms.
🕒 Takes about 15 minutes.

Your experience can help improve awareness, care, and quality of life for others.

💬 Please note we can’t respond to personal questions, as the survey is anonymous.
🔗 Take the survey here: https://bit.ly/4pTiEts [bit.ly]

Please note that the survey is in English

09/11/2025

🇮🇸 Spotlight on Lupus Iceland!

At our , Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.

Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍

📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.

💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network.

💜 And they’re working to translate into Icelandic! Making reliable information about lupus accessible to even more people across Europe.

👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!

02/11/2025

31/10/2025

Fc receptor blockade by nipocalimab 15 mg/kg significantly improved clinical disease activity versus placebo and was safe and well tolerated in participants with moderate-to-severe, active Sjögren's disease. Reductions in IgG autoantibodies during nipocalimab treatment support their contribution to...

29/10/2025

Three years after Michael was diagnosed, his heart had become so damaged by that he had to undergo a transplant.

🌱 As intimidating as this reality is, Michael advocates for the importance of refocusing on new things, learning to enjoy them, and adjusting to a life that looks different than what you had imagined.

Michael fills every day with meaningful things he loves doing - things that are still accessible with his disease - in order to prioritise joy and practice self-love.

💛 Scleroderma is rarely easy to manage - and it can be hard to stay positive - but you have to keep fighting, to live the best life that you can.

🌻 Listen to the rest of Michael's inspiring testimony: https://www.youtube.com/watch?v=QWVwZpSlT2U&t=106s

27/10/2025

26/10/2025

After taking a shower, consider using a terry cloth robe to gently dry off, or let yourself dry naturally to allow the moisture from the water to be reabsorbed by your skin.

26/10/2025

Webinar: Vaccineren bij reumatische aandoeningen.
Dinsdag 25 november, 12u

Is het veilig om je te laten vaccineren als je een reumatische aandoening hebt? Welke zou je best elk jaar vernieuwen en welke vermijd je best? Is er interactie met mijn standaard medicatie? ...
Deze webinar biedt antwoorden op jouw vragen rond vaccineren wanneer je reuma hebt.
Gratis toegang via de link in volgend artikel: 👉https://reumanet.be/content/webinar-vaccineren-bij-reumatische-aandoeningen

26/10/2025

Ook in het Nederlands beschikbaar. Doe ook mee aan deze enquête!

📢 Calling all patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

🔗 https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm