Run for Rare Kids - Run for Rare Kids is organized by the Hope Fund and VnExpress Newspaper in coordination with the vRace platform, to raise funds to support treatment for pediatric patients in difficult circumstances.
The race is implemented online, recording achievements within a month on the sports application vRace, expected to attract about 5,000 participants nationwide.
Accompanying the program as ambassadors are Miss Universe Vietnam 2017 H'Hen Nie and musician Hua Kim Tuyen. Immediately after the launching ceremony on March 1st at Thong Nhat Park, hundreds of doctors and delegates participated in a response run, officially launching a 30-day journey to raise funds for children living with rare diseases.
Dr. Nguyen Trong Khoa, Deputy Director of the Department of Medical Examination and Treatment Management - Ministry of Health shared: As people working in the medical industry, we understand very well the feeling of helplessness when looking at a baby who needs medicine but the medicine is not available for treatment, or the medicine is not covered by insurance and is beyond the family's ability to pay; then the family must consider between treatment and livelihood. Therefore, I believe that activities like'Run for Rare Kids' have a meaning far beyond a sports event.
Currently, more than 7,000 rare diseases have been recorded, affecting over 300 million people worldwide. About 70% of rare diseases originate in children, mostly due to genetic causes, chronic progression, complexity and requiring lifelong treatment and care.
According to data from the Ministry of Health, 6 million Vietnamese people live with about 100 rare diseases, of which 58% are children, and many children die due to late detection. Not only is it difficult to diagnose, rare diseases also pose a very large financial burden for patients and their families.
Common and characteristic rare diseases in Vietnam such as hemophilia: Patients lack blood clotting factors, are prone to bleeding.
Thalassemia: A common genetic disease, causing chronic anemia.
Lysosomal Storage Disorders: Including Pompe, Gaucher, Fabry, MPS diseases... affecting physical and intellectual development.
Xeroderma Pigmentosum: A strange disease that causes skin ulcers, common in some small areas.
Other diseases: Wilson's disease (copper metabolism disorder), multiple sclerosis, myasthenia gravis, lupus erythematosus, and rare cancers in children.
The "Run for Rare Kids" race takes place until March 31, 2026. The entire registration fee is said by the organizers to be used to directly support pediatric patients with rare diseases, contributing to reducing the treatment burden for the patient's family.
