Results: • National Institutes of Health Protocols (Drug Trials and Natural History Study)
• Gained interest and support from media outlets around the country.
• Gained interest from several medical schools around the country.
Programs: Compiles patient data to assist in research, runs conferences to collect & provide disease information and provides info and support to affected families
As a volunteer, concerned citizen, but most importantly a proud member, I am very enthusiastic and passionate of the needed work the HPS Network is doing. Finding dedicated researchers and advocates for a rare genetic disorder affecting thousands of albinos around the world. Gathering and educating anyone willing to learn and spread the word, our mission is to find a cure!