Living with Gaucher Disease: Zhengtao

Sanofi Genzyme has been committed to the Gaucher community for more than 30 years. We launched the first therapy for Gaucher disease in 1991 and shortly thereafter established a humanitarian program, enabling patients in circumstances where treatment access is limited gain access to therapy.

Today, our commitment continues with more than 6,000 patients around the world on a Sanofi Genzyme therapy for Gaucher disease, including 400 receiving treatment free of charge through our humanitarian program. Our research and development also continues, as we apply our knowledge to the development of investigational therapies for patients with Gaucher disease type 3 and a genetic form of Parkinson’s disease.

October 1 marked International Gaucher Day and in the U.S. October is recognized as National Gaucher Disease Awareness Month. In honor of those living with Gaucher disease, we tell stories that demonstrate the strength and success of those living with this rare disease.

Zhengtao, China

In 1998, after years of searching for information and hope for her family and her three-year-old son who had been diagnosed with a disease she'd never heard of before, a mother stumbled upon Genzyme’s website. She sent an email to the company with a message along the lines of: “My son has Gaucher disease. We live in China. Can you send us medicine?”

Image of Humanitarian patient named Zhengtao

Those few sentences eventually led to Zhengtao becoming the first Gaucher patient treated in China when he was nine years old. Now 28 years old, Zhengtao is still a humanitarian patient in Sanofi Genzyme’s China Charitable Access Program, which currently provides treatment to more than 100 Gaucher patients.

Zhengtao is also the founder of China’s first Gaucher disease patient organization and started the Firefly Choir, composed entirely of rare disease patients.

“I founded the Firefly Choir, a chorus composed by rare disease patients. In 2013 we conducted our 1st concert in Beijing, and over 500 people came to watch our performance. During the curtain call, we cried – tears not for the disease and pain we have gone through, but for hope that we always bear in mind,” says Zhengtao.

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Last update: 10/2017

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