Articles

1. Overview Rare diseases affect small populations but impose an immense economic burden. Although global awareness has increased, drug accessibility remains highly unequal across countries, especially in developing health systems like China’s. 2. Policy Progress in China China has taken significant steps in building a rare disease policy framework. Since 2018, the first National Rare Disease List  (covering 121 diseases) and the establishment of the National Rare Disease Dia

“A person's life should be lived in such a way that, when he looks back, he does not regret wasted years nor feel ashamed of an idle life,”wrote Pavel Korchagin. . “In the water, I feel much freer than on land,” Jianzhe says. In 2020, at the age of twenty-two, he earned his Handicapped Scuba Association (HSA) certification — becoming the first person with a disability in China to do so. Jianzhe was born with Emery–Dreifuss muscular dystrophy (EDMD), a rare genetic disorder ca

On the last day of summer vacation, I visited both the Summer Palace and the Old Summer Palace. I was a little tired, but the weather was so beautiful that I felt I should linger a bit longer with that gentle sunlight and breeze. I unlocked a shared bike on the street and slowly rode toward the Temple of Earth Park. Right at the entrance stood a large park map. The markings on it were unusual, unlike those in other parks. Looking closely, I realized they were all accessibilit

Damages of Off-Label Drug Use   Target Audience: high school students(aged 15-18) and middle-aged adults(aged 45-55)       Part I: Campaign Plan 1. Research Information Off-label drug use or using medications beyond their approved indications, is a complex yet crucial aspect of modern medicine. This practice is particularly common in treating rare diseases, where limited patient populations make large-scale trials unfeasible.  In Analysis of Off-Label Drug Use in Rheumatoid A

I realize I've almost never seen a person with disabilities traveling alone on the street. More precisely, I’ve rarely seen people with disabilities at all. Yet I know that many rare disease patients I’ve met live with various forms of disability. Once, I was talking with my friend Zhijian, who studies in Macau. He told me that the accessibility facilities there are excellent. Later, I escorted him out of a hotel conference room—perhaps partly to see for myself whether what h

The pain strikes again. Every time I wake from a nap, I might be hit by that sharp, splitting headache. I' ve taken medicine, done tests, yet the pain persists—random and unpredictable. Maybe it's stress? Whatever the cause, it hasn't faded; it has simply become part of life. Pain has reshaped my world. I began to understand why, in Silent Hill 2, James’s sick wife turned into a monster in his mind. My pain made me irritable at everything: It became routine to yell at my pare