Whether you are a general practitioner, a nurse-practitioner, a specialist or any other practitioner in the medical profession, your quest for knowledge has brought you here – Welcome! Part of our mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism, so we hope the information you find here will help you to see your patient as a whole person who happens to have albinism. We also hope the exchange of information will increase the body of knowledge about this rare genetic condition.
You can do your patients and their families an invaluable service by using the printed materials offered here to refer them to a one of a kind group where they can find information and support, and get connected with a community that cares. Please use these resources to connect those you serve with people who get it and have walked in their shoes.
As you deal with the medical issues associated with albinism, your patient’s family may need more. We have put together information bulletins that may be helpful for your patients and their families.
As medical professionals make us aware of current research, we will post information or links to sites describing research that is underway.
Periodically we will post articles from medical professionals about the vision of people with albinism as well as differences in the eye. Check back often!
Hermansky-Pudlak Syndrome (HPS) and Chediak Higashi Syndrome (CHS)
More information regarding the symptoms and treatments for these rare types of albinism can be found at www.hpsnetwork.org.