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Patient Voices in Drug Research
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One mom’s journey into patient advocacy started after two of her daughters were diagnosed with galactosemia, a rare disease. There’s finally a potential new treatment for this condition, which families say has helped their children who have participated in the clinical trial. But they’re worried their voices are being ignored.
Jodie Solari, Communications Lead for the Galactosemia Foundation shares how the diagnosis changed her life into a life of advocacy, and why she’s pushing for the voices of families like hers to be considered when reviewing new treatments.
Galactosemia Foundation Webpage
Glactosemia Foundation Webpage: Advocating for a Treatment
Voice of the Patient Report: Galactosemia
Protecting Patients Against PBM Abuses Act
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
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