An event was held at Children's Hospital No. 1 in HCM City to celebrate Rare Disease Day 2023 on February 28. — VNS Photo Nguyễn Diệp

HCM CITY — An event themed ‘Sắc Hoa’ (Beautiful Flowers) on Tuesday (February 28) took place at Children's Hospital No. 1 in HCM City to celebrate Rare Disease Day 2023.

The second annual event, organised by the hospital and the Vietnamese Organisation for Rare Diseases in collaboration with French pharmaceutical company Sanofi Vietnam, welcomed the attendance of many rare disease child patients and their families.

Rare Disease Day is celebrated every year on February 28 (or 29 in leap years) to shine a light on people living with a rare disease (PLRD), including rare disease patients, their families and caretakers.

Speaking at the event, deputy director of Children's Hospital No. 1 Ngô Ngọc Quang Minh said there are more than 7,000 known rare diseases in the world with new ones being discovered every year, affecting the lives of about 300 million people.

A disease is rare when it affects fewer than 1 in 2,000 people within the general population.

According to the World Health Organization, there are approximately 100 rare diseases reported in Việt Nam.

It is estimated that almost one in 15 persons, or approximately six million people in the country, suffer from a rare disease.

“Early detection is a key for treating rare diseases,” he said. However, rare disease treatment is costly, and there is often still no treatment for many rare diseases.

In addition, PLRD face a lot of challenges and one of them is not understanding what they will be facing after diagnosis.

“Deeper understanding and sharing the difficulties and challenges facing PLRD from the government and community are necessary,” he said.

Many child patients suffering from rare diseases attended the celebration event Rare Disease Day held at the Children's Hospital No. 1 in HCM City on February 28.

Emin Turan, general director of Sanofi Vietnam, said the company has been a pioneer in supporting the diagnosis and treatment of rare disease patients nationwide since 1997.

Nine gaucher patients, 62 pompe patients, 13 MPSII and five MPSI patients in Việt Nam were provided free medicine for treatment thanks to the company’s rare disease international compassionate assistance programme (ICAP) over the past 25 years.

It donated VNĐ200 billion (US$8.4 million) to its ICAP programme last year alone.

It also helps update the knowledge and professional skills of Vietnamese doctors and medical staff towards early detection and treatment of rare diseases, and improve rare disease patients’ access to enzyme replacement therapy (ERT) treatment. — VNS