Gala raises awareness of rare diseases, supports families

About 95 percent of people have a mutated gene which can lead to the inheritance of at least one rare disease, experts said ahead of World Rare Disease Day on Monday.

On average, everyone carries the genes for 3.2 rare diseases. This means each child has a one twentieth chance of suffering from a rare disease.

Patients, staff of non-governmental organizations for rare diseases, medical experts and governmental officials gathered at the Shanghai Education Station to run a gala to share stories, arouse public awareness of rare disease prevention and control, and support patients and their families.

Diseases with the incidence of 0.65 to 1 per 1,000 are identified as rare diseases. There are over 7,000 rare diseases worldwide. About 80 percent are inherited, affecting some 350 million people in the world and over 20 million in China. About half of rare disease sufferers are children. About 30 percent of children with rare diseases die before the age of 5. Rare diseases are also responsible for 35 percent of the deaths of infants younger than 1 year old.

The theme of this year's World Rare Disease Day is "Share your colors."

Jin Sheng, who has type I diabetes, runs the city's first NGO for children with the same disease.

The incidence of type I diabetes is 2 in every 10,000 people. This type of diabetes is most common in children and minors, who suffer both physical and psychological impacts.

"I started to develop the disease at the age of 12," he said. "I want to help children with the same experience as me, and help them and the families to better understand and control the disease.

Jin works with doctors at the Children's Hospital of Fudan University.

"Whenever there is a new child patient with type I diabetes, we will go to offer support and guidance for the patient and the family," he said.

"I use myself as an example to tell the patients and their families that people like us also can enjoy a happy and normal life."

Ma Xingfa from the Shanghai Science and Technology Commission welcomed more volunteers to participate in the campaign for rare disease prevention and control.

"Due to the low incidence and small quantities of patients, public awareness and medical research on rare diseases is far from enough," he said. "The more social awareness, the bigger support from all walks of life."

Ti Gong