Behind the Mystery of Gaucher Disease
October 2, 2023
We follow the story of Fan, a Gaucher disease patient who, at 2 years of age, had to struggle with a disease that was untreatable in her home country of China. She shares about her journey from becoming the first person in China to receive treatment to coming to the U.S. to continue receiving her life-saving treatment.
Our exclusive in-studio interview will share insights from Jim Howley, Global Lead of Patient Advocacy and Engagement at Prevail Therapeutics, and Cyndi Frank and Aviva Rosenberg, co-founders of the Gaucher Community Alliance (GCA). We also meet with Dr. Ozlem Goker-Alpan, Founder and President of The Lysosomal and Rare Disorders Research and Treatment Center, who shares her expertise on managing people with Gaucher disease.
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You may recognize Dr. Tracy Dixon Salazar, Executive Director of LGS Foundation from her feature on the TODAY show, but her story was first shared on our television and social platform, Behind the Mystery. Within these episodes, Tracy shares her daughter Savannah’s Lennox-Gastaut Syndrome journey, and how she advocates for those living with LGS. She […]
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