The National Cancer Center (NCC) is building an integrated information platform for rare cancer patients and their families. Patients are expected to be able to access disease information, specialist physicians, and clinical trials all in one place.
The NCC announced on July 2 the official launch of the Rare Cancer Information Portal (rarecancer.kr). The portal is a public platform designed to address the limited access to information that rare cancer patients have long faced.
Rare cancers are a field where information is scarce due to the low incidence of individual diseases, and patients face significant information gaps during treatment. Until now, patients often relied on internet searches and online communities, frequently encountering unverified information.
The newly established portal focuses on addressing these problems. It provides integrated services including △rare cancer disease information search △clinical trial information linkage △patient association and community information △specialist physician and hospital search △online consultation (Q&A).
In particular, the portal was designed to reference credible international sources such as the Genetic and Rare Diseases Information Center (GARD) under the U.S. National Institutes of Health and the National Organization for Rare Disorders database, while collaborating with domestic researchers to provide information tailored to Korea's conditions.
The NCC sees the portal as going beyond simple information provision to improving treatment accessibility. The plan is to expand connections with specialist physicians and opportunities for clinical research participation, enabling patients to find treatment pathways more quickly.
Data-driven enhancements are also planned going forward. The center plans to accumulate big data through its rare cancer research network and build an artificial intelligence-based information system to support personalized diagnosis and treatment pathway guidance.
"We built this portal to improve the reality where patients had to navigate multiple channels just to find accurate information," said Kim Jun-hyuk, head of the Rare Cancer Research Project Unit. "We will serve as a core hub connecting medical care and research as a patient-centered public platform."