As with many events during the COVID-19 pandemic, the Canadian Scleroderma Conference was a little different this year. Instead of medical professionals, caregivers and attendees getting together in person, the conference was hosted online, giving attendees a virtual front-row seat in their own home.

The five-day conference featured leading experts from Canada and the US speaking about the latest useful and thought-provoking information on living with Scleroderma. The presentations covered a wide range of topics such as support for caregivers, updates on the latest medical research, as well as practical tips on diet and dental care.

Dr Brett Thombs, leader of SPIN, the Scleroderma Patient-centred Intervention Network, gave the keynote address on the progress of the latest research by the organisation. The results have led to the creation of practical toolkits for living with Scleroderma, now available through SPIN’s website. Scleroderma Victoria along with Scleroderma Australia, Scleroderma Queensland, and Scleroderma New South Wales all contributed funds for the SPIN programs. Dr Thombs also highlighted the importance of research and encouraged more people to join focus groups and complete surveys to help with future projects.

Other conference highlights included:

  • What support is available for caregivers, especially when caring for someone with a rare disease like Scleroderma.
  • The importance of trying different nutritional strategies for people with GI symptoms rather than trying to follow a one-size-fits-all diet
  • A summary of the latest exciting developments in stem cell transplants and how they could assist people with Scleroderma.
  • An update on medication for Scleroderma; what’s available now and what looks promising for the future.

Although it felt strange and a little sad to be unable to connect with the Canadian Scleroderma community in person, having a virtual conference means all the presentations are available to browse at your leisure on YouTube. You can also find the presentation slides in the resource centre on the Scleroderma Ontario website. Now, more people than ever can learn from the experts.