Special art exhibition raises awareness of rare diseases

A special painting and video exhibition will tour local hospitals and art museums until June, raising public awareness of rare diseases. All the work on display is made by patients with rare diseases.

This year's World Rare Disease Day falls on Tuesday, with the theme "share you colours." Patients, staff of non-governmental organizations for rare diseases, medical experts and government officials gathered at the Shanghai Education TV Station on Monday. They unveiled the exhibition, sharing patient stories, encouraging public awareness of rare disease prevention and control, and supporting patients and their families.

The majority of the work at the exhibition comes from Lanjian'er, who suffers symptoms of muscular atrophy and is unable to walk. His disease is still yet to be diagnosed.

Ti Gong

Being unable to go to school or receive any art training, he uses his two fingers, the only part of his body he can move freely, to create his art on a computer.

Diseases with incidences 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 infant deaths younger than 1 year old.

A difficulty in diagnosis, lack of medicine and high medical expenses are obstacles for most rare disease patients. The exhibition is one of the drives to draw public attention to rare disease patients and their families, officials said.

The exhibition will tour around Fudan University's Children's Hospital, Shanghai Children's Medical Center and Shanghai First Maternity and Infant Hospital from March to May. The main exhibition will be launched at Cheng Shifa Art Museum with the closing ceremony in June.

Ti Gong

Ti Gong