Wolfram Syndrome Global Awareness Day – Oct. 1
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.
The groups discussed who we were going to contact and how. It was decided for this first year that we would target clinicians and groups in the countries where we had contacts as well as global organisations in the fields of Ophthalmology, Diabetes and Endocrinology. A logo was created as well as a website specifically for the awareness day, www.globalwsday.org, with the information that was sent out, information about WS in general, details of doctors around the world that see patients with WS as well as all the WS groups.
We also contacted you, our WS community to get involved where you could. We asked if you could help with raising awareness by contacting your local press and tv news stations to publish your story about living with WS, if you wanted to fundraise for your WS organization this was a good opportunity and, on the day, we asked you all to join in with a global social media relay event that started at 10.00am in New Zealand and moved across the world with people posting and sharing at 10.00am in each country.
This year we intend to target the sending of information and raising of awareness to Neurologists and Geneticists globally. Wolfram Syndrome UK (WSUK) will also be holding their face-to-face families conference on this date, which seemed appropriate. We would love for you all to become more involved with this so that it becomes bigger each year and raises the awareness of our syndrome and invite interest from clinicians and researchers into finding out more. This in turn could help make diagnosis quicker and help their patients. It could help to spark interest into areas of research already being carried out that could also help those affected by WS.
Updates on this event will be posted on social media as well as newsletters. If you would like to know more or how to get involved you can contact Tracy Lynch at WSUK – tracylynch@wolframsyndrome.co.uk. You are welcome to share the WSGAD website with your clinicians or care teams as well – www.globalwsday.org .
