Like many other charities and organisations this year, Wolfram Syndrome UK had to change the way we held our annual conference for our community, clinicians, and researchers at the end of September.
Switching to a virtual conference
As we made the decision that we would have to go to a virtual conference, we decided this would be a great opportunity to really open it up to the wider global Wolfram syndrome (WS) community and enable them to join in. We promoted our event via our e-newsletters, our website, our social media pages as well as pages we are linked with.
It was decided to have participants register for each of the presentations, this way they could choose which ones they wanted to watch, and we wouldn’t risk people dropping out and not coming back. The agenda was sent out with the times for each topic and the registration links to each one. By asking people to register it meant that we were able to capture some useful information such as email address, where they are from and their link to WS. We have then been able to send out a feedback questionnaire afterwards to help us plan future events as well as asking for permission to add them to our mailing list. We recorded each presentation and the two workshops so those community members unable to join on the day were able to watch later from our website and social media pages.
The ups and downs of a virtual conference
Feedback has been positive for this event as we had people from countries including USA, Japan, Hong Kong, and Australia able to participate who wouldn’t normally be able to attend for just a weekend. So in this respect a virtual conference worked well. It was however slightly more stressful with regards to the planning and execution. One speaker was away from the mainland and wasn’t sure how reliable the Wi-Fi signal would be. He did send a recording, which we had to use, but this just didn’t work as well as a live presentation. Also, there was the worry that if a speaker didn’t log on due to issues it wasn’t as easy to swap the presentations around as it would be if you were in a live conference. One downside was the fact that we couldn’t have the social side of conference which many of our community look forward to just as much as hearing the speakers and attending the workshops.
Hopefully we will be able to return to normal next year! We are already underway with the planning and will plan as if it will be a normal conference, but we’ll be ready to convert to an online conference if necessary.
ABOUT WOLFRAM SYNDROME UK
Wolfram Syndrome UK (WSUK) are the only charity and website in the UK for this ultra-rare condition. WS has four main features - Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness. The two features that should alert a medical professional to the possibility of WS are the Type 1 diabetes and vision loss or OA. No two patients are affected the same and there are many additional medical issues that an affected person can develop. As many medical professionals have never heard or come across the syndrome, it was felt the UK required a website where these professionals and families could find information and support that might be helpful to them. WSUK as a national charity help fund research and provide support for those affected by the condition and their families. We feel the more people that know about WS the better; and will endeavour to make sure that hospitals, Doctors and other health care professionals are aware of this site.
Registered Charity No: 1152445
Rare Revolution Editor