Hi, these are screenshots from the conference. Do you want the patchwork we shared or all the screenshots? (Dav)

@karinasturm.bsky.social Thanks again for our interesting exchange (Benjamin)!

For me (Davina) it took around 15 years. Like you, symptoms had been around since childhood but wasn't heard. Even now, it's a battle to receive appropriate care where I live now, while some symptoms worsen ... Even with more knowledge, it's still complicated...
Thank you for sharing your story🦓🩵💫

Thank you so much for your support and repost 💫💫💫

Thank you. We make the changes. Hope without mistakes 😅

Thank you for being part of the journey. Your support means the world to us. 💫

💡 Let’s pave the way of hope together — for better diagnosis, better care, and better futures.

👉 We just launched our crowdfunding campaign and need YOUR help to make this possible. Whether you can donate, share, or simply spread awareness, you’re already part of this journey.

🧬 This project is fueled by real stories, real struggles — and the hope that science can bring change.

For too many, the journey to a diagnosis takes 10+ years, filled with doubt, misdiagnoses, and invisible suffering. We believe people living with EDS deserve better. That’s why our team is working to discover biomarkers that can make diagnosis faster, fairer, and more accurate. 🔬❤️

Today, we’re proud to launch a research project dedicated to improving the diagnosis of Ehlers-Danlos Syndrome (EDS) — a group of rare and often misunderstood connective tissue disorders that affect millions around the world. 💔

🌟 After a few weeks of silence, we're thrilled to finally share something close to our hearts — the latest project from Brigant Lab, and it needs your support.