Medical References & Organizations
Deafblindness is associated with many different syndromes, conditions, and diseases. POPDB Teachers are not medically trained and do not profess to be experts in any medical area. Like you, we often consult reputable sources of information to learn more about different syndromes, conditions, and diseases. We feel the following websites are trustworthy sources of information at this time. Keep in mind that websites sometimes change without notice or are not updated in a timely fashion, so information may not be reliable. POPDB has not independently verified any of the information. No one should rely on medical or scientific information contained on these websites - always consult with your doctor and be guided by them when considering research or treatment. If you decide to check out any of the following websites, it is at your discretion and your liabiltiy.
Online Mendelian Inheritance in Man (OMIM)
This online reference for human genes and genetic disorders is a comprehensive, authoritative compendium.
Genetic Home Reference
From the NIH US National Library of Medicine, "learn about the signs and symptoms, causes and inheritances of more than 1,300 health conditions with a genetic basis" - GHR main page. Information is comprehensive and easy to read.
CHARGE Syndrome Foundation
The CHARGE Syndrome Foundation is a non-profit organization that offers a wealth of information about CHARGE Syndrome including information, medical management, and development. The foundation supports research into CHARGE Syndrome. Teachers and families will find a wealth of information related to education and deafblindness as well as webinars.
CHARGE Syndrome Association of Australasia
At this website, you can learn more about CHARGE Syndrome. The association publishes the book Why I am me: All about CHARGE Syndrome that teachers and families may find helpful.
Usher Syndrome Coalition
Usher Syndrome is the most common genetic cause of combined deafness and blindness - main page. You can find a lot of information about Usher Syndrome at this non-profit's website including updated research, pychosocial research, nutrition, and more.