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Monday, October 23, 2017 9:00 am EDT

Living with Gaucher Disease

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.

Suyog ,India

Suyog’s family felt hopeless when they learned he had Gaucher disease, a rare disease that was virtually unknown in India in 1999. By this point, his liver and spleen had swollen considerably, and he had difficulty breathing. When they learned treatments existed, his parents wrote to Genzyme to see if there was any way assistance could be provided to their son. They were delighted to hear back with the news that their son would be receiving treatment free of charge.

Today, Suyog has completed his degree in engineering, and is working in an IT company. He aspires get an MBA in future, and also dreams of becoming a commercial pilot. He regularly works out at the gym, likes driving and his hobbies include traveling, music and photography.

Sanofi Genzyme’s India Charitable Access Program (INCAP) has provided treatment at no cost to Suyog and other patients who are not covered by insurance and lack the financial resources to obtain treatment. Formally established in 2007, INCAP now treats more than 100 patients, and has made strides in improving awareness, diagnostics, and management of patients suffering from LSDs in India.

Today, the humanitarian programs in Egypt, China and India make up almost half of our humanitarian efforts around the world. We’ve established country specific programs in these markets managed by a team of local medical experts that work to ensure the programs meet the unique needs of the patients we serve.

Over the last two decades, our humanitarian programs have evolved and expanded to now support five different lysosomal storage disorder communities around the world.

“These are only the stories of a few patients,” said Cristiana Salgado-Braga, Sanofi Genzyme’s Global Head of Rare Hematology. “However, they exemplify the spirit and determination of hundreds of Gaucher disease patients around the world who have received therapy through our Humanitarian program over the past 26 years.”

Learn more about our Humanitarian Program.

To learn more about Gaucher disease, visit https://gauchercare.com/

 

Last Updated: 9/27/2017
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