Sclero'ken vzw

16/06/2026

Een aangrijpende film.. Kan je er nu niet bijzijn? We gaan alvast proberen om de film nog tot bij jullie te brengen.. Omdat dit mooie project van Daan Gielis nog zoveel meer kan betekenen… 🍀

Net op het moment dat de carrière van de jonge kunstenaar Daan Gielis (34) de wind in de zeilen krijgt, gaat zijn gezondheid steil bergafwaarts. Daan lijdt aan een auto-immuunziekte, en moet zo snel mogelijk een uiterst risicovolle hartoperatie ondergaan. In HAPPY SAD vertellen Daan en zijn geliefd...

13/06/2026

https://www.facebook.com/share/v/18tvyD671a/?mibextid=wwXIfr

12/06/2026

🎓 ERN ReCONNET Webinar | Systemic Sclerosis (SSc)

We are pleased to announce the upcoming ERN ReCONNET webinar:
“Systemic sclerosis and pregnancy, a 2026 update”

Pregnancy and systemic sclerosis: what are the real risks, and how can they best be managed?
In our upcoming webinar, we'll explore the medical aspects of pregnancy in patients with systemic sclerosis. An unmissable opportunity to gain clarity with the guidance of leading experts.

👉 Please note that the webinar is available with subtitles in 36 different languages.

Event Details:
• Date: 17th June 2026
• Time: 16:00 CET
• Target Audience: healthcare professionals, but patients are welcome to attend
• Dedicated to: Systemic Sclerosis (SSc)
• ✍️ Registration: rb.gy/nvc7fk

🎤 Speakers: Dr. Benjamin Chaigne
🎙 Moderator: Prof. David Launay

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

08/06/2026

🎓 ERN ReCONNET Webinar | Antiphospholipid Syndrome (APS)

We are pleased to announce the upcoming ERN ReCONNET webinar:
“How to find hidden Antiphospholipid Syndrome (APS)”

APS is hiding. Can you recognize it?
APS is one of the most elusive autoimmune diseases: heterogeneous presentation, multi-organ involvement, and variable laboratory test results. Cases that seem unexplained, concealing a hidden diagnosis behind unusual clinical and laboratory pictures.
How do you avoid missing it? How do you navigate the complexity when the clinical picture isn't the classic one?
In this webinar, we'll tackle the most challenging cases, the ones where APS disguises itself, to learn how to uncover it even where you least expect it.

👉 Please note that the webinar is available with subtitles in 36 different languages.

Event Details:
• Date: 10th June 2026
• Time: 16:00 CET
• Target Audience: healthcare professionals
• Dedicated to: Antiphospholipid Syndrome (APS)
• ✍️ Registration: rb.gy/ik0pjm

🎤 Speakers: Dr. Paola Triggianese and Prof. Angela Tincani
🎙 Moderator: Prof. Savino Sciascia

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

06/06/2026

Ben je er graag bij op deze boeiende avond? Geef dan alvast jouw aanwezigheid door.. 🍀🌻

03/06/2026

Op reis met een chronische ziekte? Dat vraagt best wat voorbereiding. Plusmagazine zorgde voor een mooi overzicht zodat je niets vergeet!

👉https://www.plusmagazine.be/nl/gezondheid/tips-voor-reizen-met-een-chronische-ziekte/?utm_source=gezondheid&utm_medium=email&utm_campaign=newsletter&utm_content=email_nieuwsbrief_NB20260602&par=151805&utm_term=title

29/05/2026

Leven met een zeldzame ziekte: hoe word jij het liefst geholpen? 🤔 Jouw ervaring en mening zijn goud waard.
Om onze werking specifiek op het vlak van ondersteuning en informatie te verbeteren, herstructureren we ons Steunpunt. We willen dat dit deel van onze organisatie nog beter aansluit bij de noden van de patiënten en hun naasten.
Wat verwachten we van jou? De vragenlijst peilt naar jouw behoeften op het gebied van informatie en de ondersteuning die jij nodig hebt van een 'ideaal steunpunt'. De antwoorden worden volledig anoniem gebruikt om dit Steunpunt te vernieuwen en optimaliseren.
⏱ Duur: +/- 15 minuutjes
🔒 Privacy: 100% anoniem
🔗 Link: https://survey.zohopublic.eu/zs/Q3Bxxl
Help ons de ondersteuning voor zeldzame ziektes te verbeteren! Jouw stem maakt het verschil. 💙

27/05/2026

🎓 ERN ReCONNET Webinar TODAY
Rare Connective Tissue and Musculoskeletal Diseases (rCTDs)

Don’t miss our webinar TODAY at 16 CET: “Pulmonary Function Tests: A Practical Guide for Rheumatologists”

Event Details:
- Date: TODAY, 27th May 2026
- Time: 16:00 CET
- Target Audience: healthcare professionals
- Dedicated to: Rare Connective Tissue and Musculoskeletal Diseases (rCTDs)
- ✍️ Registration: rb.gy/wj9kh1

🎤 Speaker: Dr. Geert Van Pottelberge
🎙 Moderator: Prof. Vanessa Smith

👉 Please note that the webinar is available with subtitles in 36 different languages.

⚙️ ERN ReCONNET Resources: https://reconnet.ern-net.eu/
🗞 Newsletter subscription: https://bit.ly/48dO86Q
💻 All webinars can be seen here: https://reconnet.ern-net.eu/webinar/

07/05/2026

Uw inbreng is alvast super belangrijke… Ook in het Nederlands 🌻

📢 Reminder: ERN ReCONNET Transition Survey – Deadline Extended! 📢

To all patients with rare connective tissue diseases (rCTDs) and their carers:

There are only a few days left to take part in the ERN ReCONNET Transition Survey—and we have an important update!
🗓️ The new deadline to complete the survey is 31 May.

💬 This is a valuable opportunity to share your experiences, challenges, and needs during the transition from paediatric to adult healthcare. Your voice can directly influence improvements in care across Europe.

Why participate?
Your feedback will help shape a more effective and supportive transitional care model for people living with rCTDs. Every response counts.

🌍 Available in 20 European languages
⏱️ Takes only 15 minutes

👉 Don’t wait—take the survey today and make a difference:
• Croatian: https://bit.ly/ERNTr_HR
• Czech: https://bit.ly/ERNTr_CZ
• Dutch: https://bit.ly/ERNTr_NL
• English: https://bit.ly/ERNTr_EN
• Estonian: https://bit.ly/ERNTr_ET
• Finnish: https://bit.ly/ERNTr_FI
• French: https://bit.ly/ERNTr_FR
• German: http://bit.ly/ERNTr_DE
• Greek: https://bit.ly/ERNTr_EL
• Hungarian: https://bit.ly/ERNTr_HU
• Italian: https://bit.ly/ERNTr_IT
• Latvian: https://bit.ly/ERNTr_LV
• Maltese: https://bit.ly/ERNTr_MT
• Polish: https://bit.ly/ERNTr_PL
• Portuguese: https://bit.ly/ERNTr_PT
• Romanian: https://bit.ly/ERNTr_RO
• Slovenian: https://bit.ly/ERNTr_SL
• Slovakian: https://bit.ly/ERNTr_SK
• Spanish: https://bit.ly/ERNTr_ES
• Swedish: https://bit.ly/ERNTr_SV

📣 Help us reach more people! Share this post with your community, networks, and anyone who could contribute. The more voices we gather, the stronger the impact.

07/05/2026