CJ CheilJedang extends low-protein rice support to adult rare disease patients

CJ CheilJedang announced Tuesday it has signed a memorandum of understanding with the Korea Disease Control and Prevention Agency and the Korea Alliance of Rare Disease Organizations to establish a special food purchase support system for rare disease patients.

The agreement is designed to extend eligibility for special dietary support — previously limited to children under 19 — to adult patients with rare congenital metabolic disorders such as phenylketonuria, or PKU. Patients with PKU and similar conditions are born with an enzyme deficiency that prevents them from breaking down phenylalanine, requiring a strict phenylalanine-free diet for life. Even ordinary cooked rice is off-limits.

Under the MOU, patients aged 19 and older will be able to apply quarterly for advance purchases of special food through the Rare Disease Helpline, a dedicated online portal. CJ CheilJedang will handle production and supply of its Hetban low-protein rice. The Korea Alliance of Rare Disease Organizations will manage purchase applications and order support, while the KDCA will build the dedicated ordering system and oversee eligibility management. The support framework is set to launch July 1, once the online system is complete.

Until now, adult patients had to buy leftover stock after allocations for children under 19 were filled, or rely on expensive imported products. CJ CheilJedang has produced Hetban low-protein rice since 2009, cutting its protein content to one-tenth that of regular Hetban. The product requires a specialized process in which protein is broken down over 24 hours after milling — making production time more than 10 times longer and manufacturing costs more than twice as high as for regular Hetban. Cumulative output has reached approximately 2.9 million units.

"This agreement lays the groundwork for stable supply of Hetban low-protein rice to patients aged 19 and older," said Kim Chan-ho, head of the company's strategic support division. "We will do our best to ensure smooth production and supply, driven by our sense of social responsibility and mission."