Minutes of the 68th Designated Intractable Disease Review Committee
Overview
At its meeting on September 1, 2026, the committee reviewed 15 candidate diseases for new designation from fiscal year 2028, approving VEXAS syndrome and deferring approval of the other 14. It also approved a draft summary of public comments on proposed revisions to the diagnostic criteria and other requirements for designated intractable diseases, as well as proposed name changes for four diseases in the official notice. The committee plans to publish its responses to the comments by the end of March 2027 and to seek additional public comments on a proposed correction to the description of alveolar hypoventilation syndrome.
Key points
- Of the 15 candidate diseases for new designation, VEXAS syndrome was approved, while approval of the other 14 was deferred.
- The public comment period received 17 submissions.
- Four diseases were subject to proposed changes to their names in the official notice.
Overview
The 68th meeting of the Health Sciences Council's Disease Control Committee on Designated Intractable Diseases was held on September 1, 2026, with agenda items covering new disease designations, results of public comments on proposed revisions to diagnostic criteria and other requirements, and changes to names in the official notice.
For each candidate disease considered for new designation, the committee examined whether it met the designation requirements. Discussion points included the clarity of diagnostic criteria and severity classifications, as well as the need for long-term treatment.
Details
According to the secretariat's summary, VEXAS syndrome was approved among the 15 candidate diseases, while approval of the other 14 was deferred. Key issues for further review included diagnostic criteria and severity classifications, patient numbers, prognosis, and the requirements for long-term treatment.
The public comment period ran from June 16 to July 15, 2026, and received 17 submissions. Of these, 16 directly concerned the proposed revisions. After consolidating two duplicate submissions, 14 were included in the materials; one submission was not directly related. The committee approved the draft summary of the public comment results. Following the committee's approval, additional public comments will be sought on the proposed correction to the description of alveolar hypoventilation syndrome.
Under the proposed changes to names in the official notice, Sjogren syndrome will be renamed Sjogren disease. For three diseases—giant lymphatic malformation, giant venous malformation, and giant arteriovenous malformation—the character used for the word meaning neck will be changed from 頚 to 頸.
The committee plans to publish its responses to the comments on its website by the end of March 2027. The next committee meeting is scheduled for November 2026.