I can’t tell you how thrilled I was a few weeks ago when one of my favorite NPR programs, Marketplace, featured Hermansky-Pudlak Syndrome. I’m catching up on the blogging, so am just now able to comment on it.
I’ve actually been messaging another one of my favorite NPR programs, Science Friday, about HPS and the special issues of rare diseases for years. I still think some of our issues that are in common with all rare diseases would make a great Science Friday program.
I was very pleased with the Marketplace story. In their typical way, they took a very complex and potentially dry subject and made it accessible to the general public and interesting. If you would like to hear the story, go to: http://www.marketplace.org/topics/health-care/sufferers-rare-diseases-options-are-rare-too