Field Communication Meeting with Rare Disease Patients and Families
"A Challenge Too Great to Bear Alone"
"Some Argue Government Support Is Excessive... Public Interest Remains Low"
On December 24, President Lee Jaemyung stated, "Human life is precious, and no one should be excluded, disadvantaged, or marginalized simply because they are a minority," pledging to improve support for treatment, diagnosis, and welfare for patients with rare diseases and their families.
President Lee attended a 'Field Communication Meeting with Rare Disease Patients and Families' held that afternoon at the Heavy Ion Therapy Center of Severance Cancer Hospital in Sinchon, Seoul. He remarked, "The issue of guaranteeing treatment for those with rare diseases is something that is difficult for individuals to bear alone," making these comments.
President Lee continued, "Because those affected are extremely few in number, there are counterarguments that say it would be excessive for government policy to take full responsibility, and there is very little public attention, so the economic necessity compared to the budget spent is actually quite low." He added, "It is a difficult issue. The government has provided a considerable degree of policy support for patients with rare diseases so far, but of course, from your perspective, it is not enough, and it must be very hard in this situation."
President Lee went on to say, "The new administration is preparing many improvements regarding support for treatment, diagnosis, and welfare for rare disease patients. There are aspects that have not yet been implemented, and there are still many shortcomings." He added, "Today, I will listen to your voices, and if there are additional measures needed, we will take further action."
At the meeting held on Christmas Eve, President Lee offered words of comfort to the families of patients, saying, "The blessings and warmth of Christmas should fill the world, but I believe you are going through a very difficult time within that." He also addressed the medical staff, stating, "I imagine you are facing significant concerns and hardships because of rare disease patients and their families. I thank you for your dedication."
President Lee concluded, "By listening closely to your voices today, we will try to make further improvements where possible, and I hope that the joy of Christmas will also fill the lives of patients with rare and intractable diseases and their families." First Lady Kim Hye-kyung also attended the event.
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