- Chediak-Higashi Syndrome Association
- Genetic Alliance
- National Organization for Albinism and Hypopigmentation
- National Organization of Rare Disorders
- National Institute of Health
In 1995, the National Institutes of Health invited their first person with HPS to go to the Clinical Center in Bethesda, Maryland. Protocols to study HPS began and are indexed on the ClinicalTrial.gov site that is linked below.
Scientific Publications Library
The most authoritative and comprehensive publication on the subject of Hermaksy-Pudlak Syndrome.