Perspectives on Improving the Rare Disease Patient Journey - Dr. Maria Pfrommer, Director of Nursing Education at Osmosis and her husband, Jack Pfrommer
Regular listeners to Raise the Line know so-called "rare diseases" aren't really rare when you consider up to thirty million Americans are affected by them directly. That makes it likely you know someone who is impacted, or you know one of their colleagues, friends or loved ones. That fact has hit home at Osmosis over the last few months as we've started planning a major focus on rare diseases for 2023, which we're calling The Year of the Zebra. Several teammates have come forward to tell us their rare disease stories and we'll be sharing some of those on the podcast in the coming months. First up is our Director of Nursing Education Dr. Maria Pfrommer and her husband, Jack, who join host Shiv Gaglani to offer insights into the diagnosis and treatment journey they’ve been on to deal with Jack’s battle with retroperitoneal fibrosis, an inflammatory condition which can cause obstructions in the urinary tract. While Maria’s vast clinical knowledge and experience in healthcare systems has obviously been helpful, it was still a struggle to get the right diagnosis and treatment due to limited experience among healthcare professionals with rare conditions. “From my perspective, I really think that we need to learn more about rare disorders from every level of care,” she says. Tune in for great real-world advice for healthcare professionals dealing with rare disease patients including the importance of listening to the patient, understanding their whole life picture and focusing on transitions of care.
