Raising awareness about Refsum Disease is the key to early diagnosis and better patient outcomes. And we did just that in Thailand last week! During our visit to Bangkok, I had the privilege of meeting top retinal specialists—Dr. Peranut Chotcomwongse, Dr. Paisan Ruamviboonsuk, and Dr. Patcharaporn Wangvoravit from Rajavithi Hospital—to discuss ways to improve recognition and diagnosis of this rare disorder.
A major focus was the strong link between Refsum Disease and Retinitis Pigmentosa (RP). Since RP is a key indicator, the doctors showed great interest in reviewing existing cases to identify misdiagnosed or undiagnosed individuals with Refsum Disease—potentially leading to earlier interventions and better care.
The doctors also shared clinical insights and indicated they were recently referred a person with Refsum Disease. As a result of our visit, they will share with the individual information Global DARE Foundation, where they can obtain the most up to date dietary guidance!
Other big news - they will be sharing my business card below on the Thai Retinal Society’s social page, helping spread critical information among specialists.
This meeting was a huge step forward for Refsum awareness in Thailand. Strengthening these partnerships will drive earlier diagnoses and improved outcomes.
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