CIB-Liga vzw

04/02/2026

Zeldzame ziektendag 2026 op 28 februari!
Wordt in jouw gemeente gebouwen verlicht in de verschillende kleurtjes?
https://www.radiorg.be/nl/moedig-jouw-gemeente-aan-om-een-gebouw-te-verlichten-in-de-kleuren-van-de-zeldzame-ziektendag/

04/02/2026

Deze webinar zal in het Engels zijn.

https://www.facebook.com/share/p/1FcAwbgDU2/

🎓 ERN ReCONNET Webinar | Sjögren’s Disease (SjD)

We are pleased to announce the upcoming ERN RECONNET webinar “The Path to Better Treatments: A Patient-Friendly Guide to Sjögren’s Clinical Trials”.

How are new treatments for Sjögren's disease developed, and what does it really mean to participate in clinical research? This webinar provides an accessible and reliable overview of the clinical trial landscape, specifically designed for patients, carers, and family members.

Event Details:
• Date: 11th February 2026
• Time: 16:00 CET
• Target Audience: Patients, caregivers, and healthcare advocates
• Dedicated to: Sjögren’s Disease (SjD)
•✍️ Registration: rb.gy/t4u9p8

The speaker will be Prof. Isabelle Peene.
The session will be moderated by Prof. Gaetane Nocturne and the ePAG representative, Mrs. Ana Vieira.

⚙️ ERN ReCONNET SjD Resources: https://reconnet.ern-net.eu/disease-ss/
🗞 Newsletter subscription: bit.ly/44wk7La
💻 Webinar Archive: https://reconnet.ern-net.eu/webinar/

04/02/2026

De liga is er ook!

01/02/2026

Met trots stellen we ons symposium voor: relaties, intimiteit en systeemsclerose. Alle Belgische verenigingen die rond systeemsclerose werken hebben de handen in elkaar gestoken om dit mogelijk te maken.

01/02/2026

Onze nieuwe website staat online! Wat vinden jullie ervan?

Verstrekken van deskundige voorlichting over chronische inflammatoire bindweefselziekten. Bekendheid geven aan chronische bindweefselziekten zoals: Lupus, MCTD, Myositis, ziekte van Sjögren, Systeemsclerose en Vasculitis. Bevorderen van contacten met patiënten, medici, paramedici en andere hulpver...

31/01/2026

29/01/2026

https://www.facebook.com/share/1JbFETCz4d/

Example of HAND-SPIN exercises designed for people with ⬇️

1️⃣ For your thumbs: Place your hand on a flat surface and gently pull the base of your thumb back towards your body using your other hand (temember to release after 10 seconds and rest for 5 seconds between each one)
2️⃣ For making a fist: Place your hand on a flat surface with your palm facing upward, go through and bend each of your fingers (by putting pressure on the highest knuckle so the fingertip is touching your palm) one by one
3️⃣ For extending your fingers: For each finger, place the index and middle fingers of your opposite hand underneath it and your thumb on top and gently straighten it by applying light pressure (hold, release, repeat)
4️⃣ For your wrists: place your elbows on a table and put the palms of your hands together, drive your wrists downwards (maintaining contact at the base) until they are at the same level as your elbows

Please note that the exercises above aren't tailored to a specific degree of hand involvement - ask your doctor if you're unsure what will work best for you. 🌻

29/01/2026

https://www.facebook.com/share/p/16wbV4XT7R/

🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗

🙏 Help Prof Laurent Arnaud and his team validate the Lupus Brain Fog Severity Scale.

✅ Make lupus brain fog measurable.

⏱️ 5 minutes of your time can make a huge impact!

https://lupusresearch.limequery.org/337533?lang=en

26/01/2026

25/01/2026

https://www.facebook.com/share/1AX918LbY4/

For many people living with , one of the toughest decisions is the tradeoff between the symptoms and the side effects of the medications used to treat them.

It’s important to remember:

➡️ Side effects are often temporary as your body adjusts to a new treatment
➡️ You know your body - if something feels off for an extended time, tell your doctor
➡️ If a treatment begins to compromise your quality of life, consider alternative options

Ultimately, finding the right balance takes time. 💛

Remember to stay informed, advocate for yourself, and pivot when your care isn't making you feel your best. 🌻

25/01/2026

Sclero's, hou 28 maart vrij. We gaan iets spannend doen! Meer info volgt.