Last week the American Thoracic Society and the HPS Network held a Webinar on the pulmonary fibrosis of Hermansky-Pudlak Syndrome. Now, that Webinar is available online. It's a great resource to share with doctors. While the Webinar is about the lung disease, the first half actually may be of interest to anyone with any type of HPS. It talks about the different gene types, how rare they are and what sorts of complications are involved.
Please help us pass the word about this great resource!
Here's the link: . http://patients.thoracic.org/lung-disease-week/rare-disease-week/webinar.php