Public-Private Partnership to Ensure Stable Supply of Special Dietary Foods for Rare Disease Patients

Establishing a Pre-Order Support System for Low-Protein Instant Rice
Open to All Patients Aged 19 and Over
"Expected to Resolve Supply Shortages and Price Instability"

The Korea Disease Control and Prevention Agency is joining forces with private companies and patient organizations to establish a support system for adults with rare diseases to purchase special dietary foods. This initiative aims to improve access to special foods for patients with rare congenital metabolic disorders, who have long struggled due to supply shortages and price instability, and to alleviate their financial burden.

On June 9, the Korea Disease Control and Prevention Agency announced that it had signed a memorandum of understanding with CJ CheilJedang and the Korea Rare and Intractable Diseases Association at the auditorium of the Korea Rare and Intractable Diseases Association in Seodaemun-gu, Seoul, to promote the establishment of a 'special food purchase support system for rare disease patients.'

On the 9th, the Korea Disease Control and Prevention Agency signed a memorandum of understanding to promote the establishment of a support system for purchasing special foods for rare disease patients, together with CJ CheilJedang and the Korea Rare/Intractable Disease Association, at the auditorium of the Korea Rare/Intractable Disease Association in Seodaemun-gu, Seoul. Korea Disease Control and Prevention Agency

Patients with rare congenital metabolic disorders must continuously consume special foods, such as low-protein products, to manage their conditions. However, the domestic production and supply are limited due to the small market size, and adults aged 19 and over with rare diseases have faced difficulties in purchasing low-protein instant rice, including quantity restrictions, supply shortages, and price fluctuations. This agreement was created to foster an environment where adult patients with rare diseases can purchase special foods more reliably through collaboration between the public and private sectors.

Under the agreement, rare disease patients aged 19 or older will be able to apply in advance for quarterly purchases of low-protein instant rice through the 'Rare Disease Helpline' website. The orders will be collected in bulk, produced accordingly, and delivered to each household. The support system will be implemented starting July 1, and orders placed next month will be supplied sequentially from August onward.

CJ CheilJedang will be responsible for the smooth production and supply of low-protein instant rice, the Korea Rare and Intractable Diseases Association will manage bulk order collection and purchase support, and the Korea Disease Control and Prevention Agency will oversee the establishment of the ordering system, management of applicant eligibility, administrative support, and publicity.

In particular, this support system is notable for being available to any rare disease patient aged 19 or older, regardless of eligibility for the rare disease medical expense support program. As a result, patients will be able to purchase their desired quantities at a consistent price, improving both access to and convenience of purchasing special foods.

Seungkwan Lim, Commissioner of the Korea Disease Control and Prevention Agency, stated, "For patients with rare diseases, special dietary foods are as crucial as medication for maintaining a healthy life. Through this public-private partnership, we hope to substantially alleviate the difficulties and anxiety that patients experience in the process of purchasing special foods."

This content was produced with the assistance of AI translation services.