Stand up and be counted! Let the world know there are people out there with Hermansky-Pudlak Syndrome, Chediak-Higashi Syndrome, or even in a diagnositc limbo land. Make a short video telling something about yourself, your disorder and your life. NORD is collecting these videos to help publicize Rare Disease Day. It's a chance to bring some attention to HPS, CHS and our "diagnosic limbo" folks. Also, NORD gets a $10 donation for every video submitted!
If you make a video, please also share it with the HPS Network!