At the event (Photo: Ministry of Health) the implementation of the over the past few
years, 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 (MSA) and the
National 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 guidelines
and management.
Participants heard that a Memorandum of Understanding (MOU) on “Improving
diagnosis, treatment and management of specific rare diseases in Vietnam” for
the 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 solutions
in the treatment of rare diseases. This includes expertise sharing on
rare-disease treatment; solutions to control and manage patients with
Hemophilia leveraging technologies such as the Zero Bleed app piloted at the
National Institute of Hematology & Blood Transfusion; and joining hands
with the Vietnam Hemophilia Association to improve treatment and life quality
for patients with blood clotting disorder.
Many workshops were organised for health care providers to raise awareness
among patients and communities on rare diseases in Vietnam.
“Currently in Vietnam, there are specific therapies and medications for certain
rare diseases that help improve the effectiveness of treatment and life quality
for patients. The cooperation with leading names in this field has brought positive
changes to patients, as well as paved the way for patients and health care
professionals to access advanced treatment methods, enhancing the quality for
rare 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 Screening
at the , said: “In recent years, diagnosis and
treatment of rare diseases around the world and in Vietnam have made
considerable progress. The support from partners over the years has helped the
hospital to strengthen awareness and understanding of how to treat patients
before severe symptoms appear and mitigate the risk of death,”
Katharina Geppert, country manager of Takeda Vietnam, said she though that
increasing access to innovative medicines for rare diseases was challenging and
needed collective action.
“It must be approached in a sustainable and targeted way, to strengthen
and transform healthcare systems, at every stage of the patient journey – from
awareness and diagnosis, to treatment and ongoing patient support,” she added.
Geppert said that Takeda had worked with the Ministry of Health since 2018 to
improve the diagnosis and treatment of patients with hemophilia and primary
immune deficiency – two of the most prevalent rare diseases in Vietnam.
“The company will continue to execute our long-term strategies that
empower breakthrough treatments, improving patients’ life quality and
supporting Vietnam’s healthcare system,” she said.
According to the World Health Organization, it is estimated that 1 in 15 people
is diagnosed with a rare disease, and there are around 6 million rare-disease
patients in Vietnam.
Nationwide there are about 100 rare diseases found in the community, according
to the National Pediatrics Hospital./.
Source: VietnamPlus
