The Crohn’s and Colitis Foundation has set up an online archive of Webinars about living with bowel problems. Many of the Webinars are available in English and Spanish. While CCFA does not provide any information about Hermansky-Pudlak Syndrome (it would really be nice if they would as for us, it can literally be life and death), you may find a lot of useful information here. Please consult with your own physician who understands your HPS before making any changes to your care. Here’s the link: http://www.ccfa.org/info/webcasts
I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.