Conference days!
This will be a short and sweet blog this month as I have been having an incredibly exciting time at conferences for the past few weeks. I had the absolute privilege to go to the Globalskin Conference 2025. This was an incredibly diverse dermatology conference. I was quite nervous to attend this event as it was my first time attending a non-rare disease conference. I learned so much and will be unpacking a re-shaping my thinking for weeks with the knowledge I gained, but one of the most important learning moments I had was to see the challenges the other more common dermatology conditions face every day. This helps rare diseases, first, to empathize with these communities more genuinely, but also, it shows us some challenges that we in the rare disease networks may face in the future of our conditions. Once our conditions are more widely known, there are still major challenges we will have to overcome and some of these patient groups can help guide us. The conference was held in the lovely city of Prague and we were given a beautiful afternoon to go for some sightseeing in such an ancient and beautiful city.
It’s a long journey home from Prague to Canada, about 13 hours in the plane and a minimum of a full day’s travel. I had the chance for a quick sleep before the Canadian Organisation of Rare Disease (CORD) Spring Rare Disease Day Conference started the next morning. It was so amazing to go from a dermatology-specific conference to a rare disease conference to see the different challenges the two groups face. But far more exciting was to see how many similar challenges there are, and the more of us who realize we are sharing challenges the more power we have to amplify our voices and drive change. The major ones we addressed were the significant failings that exist for patients transitioning from pediatric care to adult, and the funding and access problems that exist in getting new therapies. We have so many people with both rare and non-rare conditions struggling with these facts that now really is the time to make systemic changes to address these issues.
Next month I will be back talking about the “how do I discuss…” blogs, but I wanted to take the time to discuss a couple of thoughts I had about the importance of conferences like these. Just like CMTC-OVM’s conference and family days, these conferences take the time to remind us we are not alone and to gain strength and renewed passion from all these people like us, whether they have our conditions or not.
