Book and coffee on table

Partnering with the Rare Disease Community

A few years ago, Vanessa Wolfeler, Global Head of Rare Blood Disorders at Sanofi Genzyme, was invited to volunteer at a summer camp for patients with hemophilia. Vanessa’s experience at the camp has inspired her work ever since.

Vanessa saw first-hand how important partnership with the patient community is for all those who play a role in a patient’s health journey—from physicians to caregivers, to companies like Sanofi Genzyme.

Watch Vanessa Wolfeler, Global Head of Rare Blood Disorders, share what inspires her to work in rare diseases.

“As a company, we are one link of this big powerful chain of continuum of care,” Vanessa explained. “It takes a village to make this happen, and we all have a role to play to help those patients.”

While volunteering at camp, Vanessa met a young boy named Luca who had hemophilia. Luca’s condition had dramatically changed the lives of his family – fear and uncertainty were a constant presence. Out of fear for her son’s safety, Luca’s mother sheltered him in their home and stopped going to work herself so she could stay home and care for her son.

During this camp, Luca’s family was able to meet some other hemophilia patients and their families, as well as physicians, social workers and other support channels. The experience helped reassure Luca and his mother that they could live full lives with this disease and helped them move from a place of fear, to a place of hope. Luca is now 11 years old a very happy young boy.

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