Korea ALD is a patient- and physician-led initiative supporting people and families affected by adrenoleukodystrophy in South Korea. We provide evidence-based information in Korean, connect patients and families, and work to strengthen collaboration with clinicians, researchers and ALD organisations worldwide.
Why it exists
There was nowhere in Korea where information about ALD had been properly put together.
ald.or.kr once existed. It no longer resolves — the domain registration itself has lapsed. It appears that when the person who maintained it died, no one took it on.
In the meantime, searching in Korean returned old posts and fragments. A parent whose child had just been diagnosed could search at night and find no answer. That went on for years.
ALD is a disease in which that gap costs a great deal. In cerebral disease, found early, transplantation can halt it; found late, there is nothing to be done. People do miss that window for want of information.
What we do
We put information together in Korean. Disease by phenotype, diagnosis and surveillance, where treatment currently stands, dietary management, and how policy stands in Korea and elsewhere — written from published research and the international consensus recommendations.
We gather what is scattered. Clinical trial listings, research carried out in Korea, past patient survey data — things that are hard to find or at risk of disappearing.
We connect patients and families. We run a KakaoTalk group and a blog through which news about ALD has been shared, and we are linked with the Naver Cafe community run by a patient’s family member. This site is not a substitute for those conversations; it is where the things that should not be lost are kept.
We look outward. We are working to widen collaboration with clinicians and researchers in Korea, and with ALD organisations abroad.
What we do not do
- We do not provide clinical care or consultation. Questions about the diagnosis or treatment of an individual patient are for the treating clinicians.
- We do not recommend drugs or products.
- We accept no sponsorship or advertising. There is no reason for anything here to favour a particular company or product.
- We do not recruit patients or collect personal data. Only the minimum needed to answer an enquiry.
How the content is written
Sources are stated. Most of the content takes the 2022 international consensus recommendations (Neurology) as its baseline and updates them with subsequently published research. Where a specific recommendation is being relied on, it is identified in the text.
Every page carries a review date. Medical information changes. Please read it alongside that date.
Where something is unknown, we say so. What triggers conversion to cerebral disease, why people with the same variant follow different courses — these are not settled. We do not fill the gaps with plausible-sounding explanations.
We correct what is wrong. If you find an error, please tell us.
Korean and English
The full site is available in Korean and in English. Even the labels in the diagrams have been translated.
The English version exists so that the situation in Korea can be seen from outside. That no one knows how many people in Korea have ALD or what condition they are in; that ALD is not in the national newborn screening panel; that not one ALD clinical trial has a site in Korea — these are facts that need to be visible elsewhere before they change.
Who makes it
A patient and a physician, working together.
We do not put the individuals forward. The trust this site earns should come not from who wrote it but from what it was written from — which is why every page carries its sources and its review date.
How you can help
- Tell us what is wrong. This helps most of all.
- Tell us what is missing. If you looked for something and it was not here, that is the next page to write.
- If you are a clinician or researcher, consider advising or collaborating.
- If you are a patient or family member, pass the site on to someone who needs it.
→ Contact
Last reviewed: 7 August 2026