10/04/2026
At in Vienna, I met the team at the Global DARE Foundation, who are working to raise awareness of Adult Refsum Disease. Hearing directly from patients who advocate for themselves and others was the most powerful lesson of the congress.
Refsum disease is a rare but treatable form of retinitis pigmentosa. A simple blood test (phytanic acid) can confirm the diagnosis, and a specialized diet can help slow its progression. Early diagnosis can protect vision and quality of life.
Thank you for the work you do. As retina specialists, let’s not miss a treatable RP. 👁️
Global DARE Foundation
