Observed arrival · 2026-09-10
한국PROS환자단체, 함께 걷는 희귀질환 community
A Korean patient organization connecting people with PROS, including Klippel–Trenaunay syndrome, while advocating for better treatment, support, and recognition.
Field notes
The organization combines public disease education with community infrastructure: visitors can review PROS and KT syndrome information, read patient-authored essays, inspect advocacy priorities, and follow press coverage. The homepage reports roughly 200 online-cafe members, 90 dues-paying members, and 308 cumulative cases in the 2019–2023 rare-disease statistics. Its advocacy agenda includes custom footwear support, expanded insurance coverage, and Korean participation in international clinical trials.
Observed signals
Read the marks
Editorial observations of this landing page, not a rating.
One card from the complete issue