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Luna and Partners Work to Accelerate Therapies for Hunter Syndrome
Advocacy organizations—the National MPS Society and Genetic Alliance—partnered with Luna to achieve this goal. In early December, we started enrolling participants in a health information-sharing and medical-discovery digital community that begins in the homes of families living with Hunter syndrome. The program is called 100 Patient Project: Unlocking MPS.
This program demonstrates a study framework where all parties are better served while enhancing research goals. This design ensures the clinical and behavioral features and key endpoints are incorporated into the drug discovery process. This can only happen when families—those who live daily with the disease and know the lived experience best—have a seat at the table as partners.
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