UNDI conference underscores importance of funding research into rare illnesses
The annual gathering of the Undiagnosed Diseases Network International (UNDI), which took place in Korea for the first time this year, brought together 282 experts from 30 countries for discussions on how to treat rare ailments.
The conference also marked the 10th anniversary of UNDI’s establishment in 2014.
“I was able to send clinical samples to a colleague in a different country after attending a UNDI conference for the first time two years ago,” said Prof. Salman Kirmaniof from Aga Khan University in Karachi, Pakistan, who noted that if it weren’t for UNDI, he would not have been able to obtain costly genetic tests for his patients.
“Unlike cancer or heart disease, rare and undiagnosed diseases affect one in a million people, making it hard to convince donors to give money to research,” Lek said. “Although the Chan Zuckerberg Initiative provides funding for research into rare diseases, it’s still difficult to obtain government support.”
Lek noted that the total of 300 billion won ($225.4 million) given by the family of late Samsung Chairman Lee Kun-hee to fund research into rare diseases in Korea “far exceeds the usual size of donations in this field.”
“The work of uncovering the genes and mutations that trigger rare diseases might seem boring, but it is incredibly important. Because governments typically shy away from investing in such research, private donations [such as the Lee family’s] can be of incredible help,” Lek said.
The SNUH project is also endowed with funds to invite experts from across Asia, which remains relatively behind in research into rare and undiagnosed diseases compared to Western nations.
Experts from other Asian countries also cited the lack of funding for research into undiagnosed diseases as an obstacle to understanding and treating such ailments.
She added the absence of support for dedicated research “impedes both diagnosis and treatment,” but that she strives to attract donations from foreign companies.
Prof. Chae Jong-hee, director of the SNUH Genomic Medicine Institute, told the JoongAng Ilbo that she expects research cooperation with other Asian countries “will also aid Korean patients” and expressed hope that such collaboration “will also improve accurate diagnosis rates and prospects for finding new and effective treatments.”
She further added that this year’s UNDI conference “laid the foundation for future cooperation between experts from around the world” and “showcased Korea’s importance as a global leader in research regarding undiagnosed diseases.”
BY NAM SOO-HYOUN, MICHAEL LEE [lee.junhyuk@joongang.co.kr]
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