On the morning of 1/3, the Hope Foundation (under VnExpress newspaper) collaborated with vRace to launch the "Run for Rare Kids" online race at Thong Nhat Park, Hanoi. This event aims to support children living with rare diseases.

Doctor Nguyen Trong Khoa, Deputy Director of the Department of Medical Examination and Treatment, speaks at the event. Photo: Tung Dinh

Doctor Nguyen Trong Khoa, Deputy Director of the Department of Medical Examination and Treatment, Ministry of Health, highlighted the challenges faced by children born with rare diseases. These children often endure prolonged hospital stays and expensive, specialized treatments, which can overwhelm family finances. For many families, the journey of treating a rare disease is not only a medical challenge but also an immense emotional and financial burden.

"As medical professionals, we deeply understand the helplessness of seeing a child in need of medication that is either unavailable, not covered by insurance, or beyond a family's financial reach," Doctor Khoa stated. "Families are often forced to choose between treatment and their livelihood. Therefore, I believe activities like 'Run for Rare Kids' hold significance far beyond a typical sports event."

Representatives of partner organizations and the organizing committee perform the launch ceremony for the race. Photo: Tung Dinh

The "Run for Rare Kids" event is an online race hosted on the vRace platform, designed for efficiency, transparency, and cost-effectiveness, ensuring maximum resources reach the young patients. The registration fee is 100,000 VND per person, with 100% of proceeds directly supporting children with rare diseases and those from disadvantaged backgrounds. Participants can run anywhere, at their convenience, by recording their results via mobile devices.

Miss Universe Vietnam H'Hen Nie and musician Hua Kim Tuyen serve as ambassadors for the program, promoting the race's message throughout its duration to encourage community participation.

Immediately after the launch ceremony, all delegates, guests, and runners participated in an inaugural run within the park, marking the start of the 30-day fundraising campaign for children with rare diseases. Notably, hundreds of doctors also ran at the event to support the young patients.

"I call upon all doctors, medical staff, and the wider community to join this race with dedication and compassion," Doctor Nguyen Trong Khoa urged. "Let every step we take become a ray of sunshine, assuring these children battling illness that an entire society is watching over and supporting them."

Ms. Nguyen Xuan Tu, CEO of the Hope Foundation, shared the message of this year's International Rare Disease Day: "More than you can imagine." She explained, "The suffering of these children is beyond our comprehension. Yet, I believe the power of empathy and sharing gathered here today will create a lifeline far greater than we can imagine."

The race is supported by AstraZeneca Vietnam, with additional partners including: WellCare CS Group Vietnam Pharmaceutical and Medical Equipment Joint Stock Company, FPT Polytechnic College, FPT For Community Fund, and the National Hospital of Pediatrics.

Doctor Nguyen Luong Phong, External Relations Director at AstraZeneca Vietnam, remarked, "As a healthcare company, we understand the importance of scientific innovation. However, science only truly matters when it reaches patients. Achieving this requires the collective effort of society. We believe that when the healthcare sector, social organizations, businesses, and the community unite, they create a force far greater than the efforts of individuals or single companies."

Delegates participate in the run at the program. Photo: Tung Dinh

The Ministry of Health estimates that 6 million people in Vietnam are affected by rare diseases, with 58% of cases occurring in children. Common rare diseases in Vietnam include: genetic conditions, cancers, infectious diseases, rare intoxications, immune-related disorders, and idiopathic illnesses. Notably, 72% of rare diseases are genetic. On average, it takes 7 years to diagnose a rare disease, often after two to three initial misdiagnoses.

Beyond diagnostic challenges, patients with rare diseases often face limited access to treatment. The high cost of medication makes treating rare diseases 5 to 10 times more expensive than common ailments. Tragically, nearly 30% of children with rare diseases die before the age of 5 due to delayed diagnosis or lack of appropriate treatment.

To register for the online race supporting children with rare diseases, visit here.

Supporting children with rare diseases is a key activity within the "Sun of Hope" program. Every community contribution adds a ray of light to the nation's future generation. Readers can support the program here:

Program name: Ten cua ban - Benh hiem

Program ID: 195961

Le Nga