January 2011: Usher Researcher Call Notes
When an Usher syndrome family is first suspected of having Usher, they usually do not know where to turn to confirm the diagnosis.
Often the local physicians and institutions are not experts in Usher syndrome and can not give detailed and/or accurate information about the disease to the family.
While there are a number of institutions that excel in one aspect of Usher syndrome (hearing or vision or balance), there are few that are expert in all aspects which often forces families to work with multiple institutions often long distances away.
Those institutions that are capable of supporting all aspects of Usher do not have a consistent process for communication between themselves, so families often get different messages from different institutions.
What would it take to set a standard of excellence for institutions supporting families so that families receive consistent, correct advice? What would those standards be? Families, what is missing from the support you currently receive from your local institutions? How could we encourage institutions to meet those standards so that such institutions are geographically accessible for Usher families?