Presented by Salem Oaks and CureGPX4, the “Raising Rare” podcast follows a parent’s journey to find a treatment for their child’s ultra rare genetic disorder. The podcast also features stories of other rare disease families, clinicians, researchers and industry leaders in the rare disease community. Host Kevin Frieirt supports patients and their families to navigate disease diagnosis and treatment. Co-hosts Sanath Ramesh and his wife Brittany Ratke are the parents of baby Raghav, who was born with a rare genetic disorder.
In this episode, “Amplifying the Patient Voice,” RPV’s Wes Michael focuses on the results of a caregiver survey that RPV conducted in December 2023. You can listen to it here:
