Although only 26 people have been identified in South Korea as being genetically predisposed to aHUS ( given its population the prevalence could be as high as 50) a publication , which can be read here , describes efforts there to raise awareness of the disease and boost successful diagnosis.
Like many of the world’s countries access to effective treatment is still lacking in South Korea but this group of clinicians , The Korean aHUS Working Group , clearly is determined to make improvements for those affected by this disease in their country.
The aHUS alliance is not aware of any public patient engagement by South Korean patients, but hopefully there is support for their clinicians at personal level to battle this disease.
Having a Korean Diagnosis and Treatment Guideline is an important stage in that battle.