Blog Katie Allen March 2024

Happy Belated Rare Disease Day! The last couple of months have been exciting, with launches and decision-making occurring in Canada, and I am so excited to share the changes coming. Canada hosted a Rare Disease Day Conference on this so very rare day February 29th. We also launched the first Canadian Rare Disease Network. This is a major development for Canada as a whole. As a Canadian with a rare disease, I have experienced firsthand the challenges of living in such a geographically large, but populationally slim country. The launch of a rare disease network offers a chance for patients to connect to experts to other patients and have new remote care potentials, as well as new treatments and clinical trials.

Throughout my childhood, I spent years travelling approximately 1,700 km to gain access to a hospital that had experts in my condition. While I was lucky to have access to doctors every few years who had knowledge and recommendations for me, the real challenge was then taking this information, as a pediatric patient from a pediatric hospital, back to the doctors in my hometown, many of whom were not pediatric. Many of these doctors bristled at being told how to treat a patient, even though they often had no knowledge of the condition and were being handed a playbook by an expert.

Another activity that kept me busy throughout February, aside from a multitude of appointments that went surprisingly well, was a campaign on Instagram with CMTC-OVM to post a variety of photos showcasing CMTC. The goal here was to ensure the photos were tagged with CMTC and other vascular malformation terms so they could become searchable images. In my journey, I found many of the images of my condition were clinical in nature, and I felt I was never represented by these cold clinical images, so hopefully, these 29 images will be added to the information journeys of new parents and patients as slightly less intimidating photos.

Overall, it’s been an exciting six weeks and the next month will be another exciting launch of the Awareness Campaign by the World Skin Health Coalition about improving access to care for all patients with skin conditions. I highly recommend checking out their open letter and signing it – https://skinhealthcoalition.org/#letter-form – as well as reading the amazing stories that patients shared about their challenges with skin health.