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Ministry to conduct exhaustive search of ‘ultra-rare’ diseases
  • By Kwak Sung-sun
  • Published 2017.08.16 11:13
  • Updated 2017.08.16 11:13
  • comments 0

The Ministry of Health and Welfare (MOHW) will conduct a complete enumeration of “ultra-rare” diseases to relieve heavy burden of medical costs on patients.

The move came after President Moon Jae-in met with ultra-rare diseases patients Wednesday in Seoul St. Mary’s Hospital서울성모병원 and heard their difficulties related to medical costs

Ultra-rare diseases are the independent diseases regarding diagnosis method and the diseases that have extremely low prevalence rate with fewer than 200 patients or don’t have separate diagnostic codes.

The ministry will figure out total demand for supporting ultra-rare disease patients based on public petitions and opinions from various groups, such as patient groups and academic associations. It also will check the propriety of ultra-rare diseases through the consultation with expert groups on the number of patients and diagnosis standards.

Once the review is over, the ministry will add them to the list of rare disease through screening by a related committee by the end of 2017.

President Moon met with You Da-in, 5, who suffers from one of the ultra-rare diseases, intestinal pseudoobstruction, and her family members in the hospital and consoled them Wednesday.

Intestinal pseudo-obstruction prevents food from going through the intestine and blocks intestine from being contracted. The diagnosis of the disease is difficult, and patients can’t get support from the government if their conditions are getting better when the cause is removed.

The ministry is operating benefit extension system to reduce patients’ burdens to 10 percent of total costs. The policy is designed to reduce the costs for patients who suffer from rare diseases that require high costs and extended treatment period. The ministry expanded the benefits to 66 ultra-rare diseases in March last year.

“We expect the extension of benefits will help to eliminate the blind spot of public healthcare policy and relieves excessive burdens of medical costs for ultra-rare disease patients,” said Kang Min-kyu, director of the Disease Policy Division.


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