28/02/2026
Today is Rare Disease Day 🧡
Kory’s daughter is living with Netherton syndrome, a rare genetic skin condition that affects around 1 in 200,000 people. It causes severe skin barrier issues, chronic redness and inflammation, extreme sensitivity and hair abnormalities. For families, it means daily care routines, specialist appointments, and constant vigilance but also incredible strength and resilience.💜
Rare diseases may be individually uncommon, but together they affect millions of people worldwide. Remember not all diseases are visible 🫶🏼
Let’s use today to spread awareness:
📣 Share your story
💬 Talk about rare conditions
📚 Educate yourself and others
🤝 Support families living with them
If you or someone you know has a rare disease, share it. Awareness leads to understanding. Understanding leads to support. And support changes lives. 🤍