Rare Diseases
Information for people with rare diseases and their families
What this board is about
With rare diseases, each condition has few patients, so information is hard to find. This room is a place to share the journey to a diagnosis, information about hospitals and specialists, and experience with support programs. Each other's experience becomes the most precious information here.
Public programs worth knowing
- The special cost-sharing program for serious illness (산정특례): for registered rare diseases, your out-of-pocket cost falls to 10% (the hospital's administration office explains how to register)
- The medical cost support program for people with rare diseases: if you meet the income criteria, you can get help with out-of-pocket costs and more (apply at a public health center (보건소))
- The Korea Disease Control and Prevention Agency's Rare Disease Helpline (helpline.kdca.go.kr) has information on conditions, on designated treatment centers, and on support programs
- When a diagnosis is hard to reach, genetic testing can sometimes be supported through the 'rare disease diagnosis support project'
Source: 질병관리청 희귀질환 헬프라인 · as of 2026-08-05
Frequently asked questions
I have been to several hospitals and still have no diagnosis
Putting your symptom record in order by date (when it started, how it changed, copies of test result sheets) and taking it with you helps a great deal at an appointment. If a rare disease is suspected, finding the relevant department at a designated rare disease hospital (search on the Helpline site) may be the shortest route.
Sources for this page
· 질병관리청 희귀질환 헬프라인 (as of 2026-08-05)Last checked: 2026년 8월 5일
Rules and costs can change. Before you make an important decision, check the official page for the latest information.