Last year all known WS groups were invited to a virtual meeting to discuss the idea of creating a global awareness day for Wolfram Syndrome (WSGAD). The meeting was attended by 7 WS groups from 5 different countries. We have Rare Disease Day which encompasses all rare diseases once year but as we are a smaller condition we tend to get overlooked. Other rare conditions have their own specific awareness days throughout the year, so it was thought that this was something we could do as well.

It was decided to have 1 st October as the awareness day as this was the date that a paper was published by the late Dr Alan Permut and his team at Washington University Hospital on the discovery of the WSf1 gene back in 1998. This date therefore holds some significance to the WS Community. Read more