Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life
Monday, November 22, 2010
International Rare Disease Day!
Mark your calendars now for the last day in Feb! It's Rare Disease Day! Stay tuned for ways you can help generate more awareness of what it's like to live with a rare disease. For now, check out the newly launched US Rare Disease Day Website: http://rarediseaseday.us/take-action-now/get-involved/