Hanoi (VNS/VNA) - Health experts reviewed the regional progress ofthe implementation of the APEC Rare Disease Action Plan over the past fewyears, at a meeting in Hanoi on December 2.

The “Advisory Council and Experts Meeting on Rare Disease Management in Vietnam”was jointly organised by the Medical Services Administration (MSA) and theNational Pediatrics Hospital.

At the event, experts also discussed the definition and list of rare diseases,as well as made presentations on rare disease diagnosis, treatment guidelinesand management.

Participants heard that a Memorandum of Understanding (MOU) on “Improvingdiagnosis, treatment and management of specific rare diseases in Vietnam” forthe period of 2018-23 was signed between the MSA and Takeda Vietnam in 2018.Since then, the MSA said that Vietnam has made great strides in diagnosing,treatment and the management of a number of rare diseases.

Vietnam has been progressing in efforts to study, approach and apply solutionsin the treatment of rare diseases. This includes expertise sharing onrare-disease treatment; solutions to control and manage patients withHemophilia leveraging technologies such as the Zero Bleed app piloted at theNational Institute of Hematology & Blood Transfusion; and joining handswith the Vietnam Hemophilia Association to improve treatment and life qualityfor patients with blood clotting disorder.

Many workshops were organised for health care providers to raise awarenessamong patients and communities on rare diseases in Vietnam.

“Currently in Vietnam, there are specific therapies and medications for certainrare diseases that help improve the effectiveness of treatment and life qualityfor patients. The cooperation with leading names in this field has brought positivechanges to patients, as well as paved the way for patients and health careprofessionals to access advanced treatment methods, enhancing the quality forrare diseases treatment in Vietnam,” said MSA Deputy Director Dr. Nguyen Trong Khoa.

Dr. Vu Chi Dung, director of the Centre for Rare Disease and Newborn Screeningat the National Pediatrics Hospital, said: “In recent years, diagnosis andtreatment of rare diseases around the world and in Vietnam have madeconsiderable progress. The support from partners over the years has helped thehospital to strengthen awareness and understanding of how to treat patientsbefore severe symptoms appear and mitigate the risk of death,”

Katharina Geppert, country manager of Takeda Vietnam, said she though thatincreasing access to innovative medicines for rare diseases was challenging andneeded collective action.

"It must be approached in a sustainable and targeted way, to strengthenand transform healthcare systems, at every stage of the patient journey - fromawareness and diagnosis, to treatment and ongoing patient support,” she added.

Geppert said that Takeda had worked with the Ministry of Health since 2018 toimprove the diagnosis and treatment of patients with hemophilia and primaryimmune deficiency - two of the most prevalent rare diseases in Vietnam.

"The company will continue to execute our long-term strategies thatempower breakthrough treatments, improving patients’ life quality andsupporting Vietnam’s healthcare system," she said.

According to the World Health Organization, it is estimated that 1 in 15 peopleis diagnosed with a rare disease, and there are around 6 million rare-diseasepatients in Vietnam.

Nationwide there are about 100 rare diseases found in the community, accordingto the National Pediatrics Hospital./.