To honour Rare Disease Day 2024, HAE Canada Board members, Kerstyn Lane and Carmen Craciun, along with staff member, Daphne Dumbrille, attended the Canadian Organization for Rare Disorders (CORD) Rare Disease Day Summit in Ottawa (Feb 28-29). HAE Canada joined others in the rare disease space to learn about many issues, such as how can Canada speed up access to drugs and why the government needs to move faster and launch the promised National Strategy for Drugs for Rare Diseases. It was lovely to have photos from the I am Number 12 campaign displayed throughout the conference space, including the photo of Kerstyn!
On Thursday, February 29th, we were lucky to secure an invitation from CORD to attend the Breakfast On the Hill Reception with MPs; and following the reception we marched to Parliament Hill to further raise awareness for Rare Disease Day. It was a windy, frigid day but we were happy to see many people marching in support of the Fight for Our Lives campaign and to mark the extra special Rare Disease Day on the rare day of February 29.