The CORD Fall Conference 2025

For the past two days, PHA Canada Board member Beth Slaunwhite and I were in Ottawa enjoying the Canadian Organization for Rare Disorders (CORD) conference "Co-Creating Canadian Rare". Pulmonary arterial hypertension and CTEPH are, of course, rare diseases, but there are so many others. Individually, each disease or disorder is rare, but collectively they're quite common: somewhere between one in ten and one in twelve Canadians has a rare disease.

The first day dealt largely with the Rare Disease Drug Strategy -- hearing about what's happened so far, but also discussing its impact and working to envision its potential future. Coordination and efficiency emerged as themes: multidisciplinary clinics (like PH clinics!) to streamline and optimize treatment; the potential for agencies like the Patented Medicine Prices Review Board (PMPRB), Health Canada, and the pan-Canadian Pharmaceutical Alliance to run their approval pathways concurrently instead of sequentially; and even the eventual emergence of common approaches to treatment across rare diseases.

The need for greater equity and transparency in the drug approval process, and for better patient engagement (including, potentially, paying patient partners for their time) was another theme, and one PHA Canada continues to follow closely.

Day Two ranged widely, from discussions of the uses for AI in helping flag potential rare disease patients for appropriate referrals to institutional, regulatory, and jurisdictional barriers to optimizing the patient journey. CORD released some preliminary results from the Impact of Rare Disease survey done earlier this year, including the shocking statistic that about a third of respondents waited longer than five years for a correct diagnosis.

We're leaving with much more knowledge than we arrived with. The biggest takeaway for me was the repeated emphasis on the societal cost of doing nothing -- in dollar terms, in human terms, in terms of equity, and ethically. If Canada is serious about its rare disease strategy, we must continue to act.

Robyn Kalda, Manager, Research & Policy, PHA Canada