Be rare, be real, and don’t be sorry
Shang HuaGe, China
Shang HuaGe is a Chinese photographer, writer, and screenwriter born in Henan in 1984, with a decade of experience in investigative reporting and photo direction. He has published extensively, received numerous photography awards, and authored “Crossing the Strait.” Beyond his artistic pursuits, Shang dedicates his work to humanitarian causes, using photography to raise funds for families facing medical crises and actively participating in disaster relief efforts worldwide.
These environmental portraits record the happiest memories of 10 rare disease patients in China. But what is it? It’s their own secret. As a photographer, I don’t know, and I don’t want to ask.
There are 2 group tours for rare disease patients in China in 2024 and 2025. Many rare disease patients and their parents are traveling for the first time in their lives. They met orher families of rare disease patients from all over China and helped each other during the journey, which was happy and unforgettable. They gave each other the confidence and courage to face the difficulties ahead in life.
Rare diseases are a global public health problem, and the treatment of patients with rare diseases is a common challenge facing the world. More than 90% of rare diseases worldwide still do not have any effective treatment options. There are more than 7,000 known rare diseases, but there are only about 700 approved rare disease drugs worldwide. In addition to Europe, the United States, Japan, and other countries and regions, the vast majority of countries, including China, are very weak in terms of the importance of rare diseases, scientific research capabilities, and drug payment security.
China is already the world’s second-largest economy and one of the countries with the highest number of rare disease patients. According to the definition of more than 7,000 rare diseases in the world, China has about 20 million rare disease patients. According to an average family of three, rare diseases continue to affect the lives of 100 million people in China.
Rare diseases are a medical science issue, an economic issue, a public governance issue, and a social civilization issue: 80% of rare diseases are hereditary diseases, and patients with rare diseases bear the risk of human genetic evolution. For patients with rare diseases, a series of problems, such as difficult diagnosis, lack of medicine, heavy economic burden, difficulty in social integration, and serious psychological problems, make them a vulnerable group in the vulnerable group. Their daily lives are often filled with complaints and negativity.
May the patients of every rare disease have medicine available as soon as possible, and may they all recover as soon as possible.