Heritage Biologics recently had the opportunity to support an important venue for rare disease patients called DISORDER: The Rare Disease Film Festival. This event takes place on October 2nd & 3rd in Boston and will feature over 30 films from around the world. Learning, sharing, and celebrating the rare disease patient experience is important to advancing the science for these disorders. We were fortunate to connect with Daniel DeFabio and learn about his inspiring story as a father of a rare disease patient.
I made a commitment to my sons that I would pick them up from their first day of school this week. I scheduled my return flight extra early to avoid the potential delay that is common out of Chicago airports. In fact, I gave myself a 5-hour cushion, but that wasn’t enough on this sunny day. They boarded all passengers and minutes later had us all exit the plane because it was “due for scheduled maintenance.” Scheduled maintenance? We were notified moments later that our new flight would not leave for another 6 hours. Yes, 6 hours. I refused to be stopped in my mission, and I escaped by taxi across town to O’Hare Airport in attempt to fly on a different airline.
Per Michael Porter at Harvard Business School’s Institute for Strategy and Competitiveness,
Per Heritage Biologics Rare Disease Outcomes Management (RDOM) approach,
In the past two weeks, I’ve encountered three different patient scenarios where competitive pharmacies are trying to block their patients from choosing an alternative provider. Give me a break.
Apparently, the Patient Experience feedback memo that patients all across America have been sending hasn’t been given a chance to reach all providers. No problem…This blog is meant to share some meaningful patient insights with those of you that haven’t heard this freight train rumbling through the halls of nearly every hospital in America over the past 5 year. The antiquated model of putting business priorities before patient care is both unethical and out of style. You know, out of style, like the leg warmer trend from the 1980’s. Just because customers buy them, doesn’t mean you should offer them!
It’s that time of year again when many parents like me will huddle around the baseball field to watch their kids enter the exciting world of T-ball. The fundamentals of baseball are thrown onto the field by coaches, umpires, and fans in hopes that a few might be absorbed by the unsuspecting children. It’s a significant challenge considering the butterflies, sandcastle material, and funny hats that easily captivate a 5-year-old. But it’s game time! Uniforms are on the kids, their gloves are on their hands (sometimes), a batter is at the plate, and the ball is on the T.
First of all, we would like to say thank you to the entire Kansas City area for your support over the past few years. As an organization, we knew that the best place in the USA to develop a leading healthcare solution was here in KC!