26/02/2026
Shining a light on Tyrosinemia 💙
Our son is one of the children living with Tyrosinemia Type 1, and this reality is our everyday life, the careful meals, the medical formula, the medication, the constant planning.
Rare diseases impact whole families in very big ways. Awareness truly matters. Research matters. Access to care matters.
🦓 Rare Disease Day Spotlight: Tyrosinemia
Tyrosinemia (TYR) is a rare metabolic condition that affects how the body breaks down the amino acid tyrosine. Without treatment, toxic byproducts can build up in the blood and cause serious health complications.
Fewer than 1K people in the U.S. live with TYR. While early diagnosis improves outcomes, TYR requires lifelong management with a strict low-protein diet, medical formula, and medication. Like many rare conditions, it remains under-researched, with limited treatment options. Families often face high care costs and uncertainty about the future.
This Rare Disease Day, we stand with everyone living with TYR and call for stronger research, expanded treatment options, and equitable access to care.
💜 Help raise awareness & share a zebra finch graphic: flok.org/rdd
👉 Learn more at tyrosinemia.org
