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Third Time's a Charm: Finding My Footing at Canada’s Rare Disease Conference
January 29, 2024
I have had the privilege of attending multiple Canadian Organization for Rare Disorders (CORD) Conferences over the last few years. It is always such a positive experience that leaves me elated, enthusiastic, and excited for the future of Canadian research and development within the rare disease space, as well as globally.
This past Fall CORD Conference was held in Calgary, Alberta and was titled “Top-Down, Bottom-up, and Coast to Coast”. This encompassed the message that CORD wants to portray moving forward and the stage they are at as a leading Canadian Organization raising awareness and fighting for national progress within the rare disorder/disease community.
My calendar always has a giant star beside the CORD conference dates. It’s a trip I look forward to taking time and time again, regardless of the sometimes difficult and exhausting travel itinerary from Prince Edwards Island, where I currently reside. Networking with leading industry professionals, hearing from top-notch speakers, or simply reconnecting with friends I have made in the rare disease community keeps me coming back and yearning for more conferences, more time spent, and more opportunities.
I grow every time I have attended a CORD or Rare Disease Day conference. I’m able to take away another little piece of information or encouragement, which intensifies inside of me, allowing me to push through those sometimes difficult days or to be able to say to someone else, “Great things are being done out there, and people who care deeply are fighting for every individual living with a rare disease.”
This past CORD conference in Calgary had a lot of discussion around the creation of patient registries which would house a vast amount of detailed information about those individuals living with various rare diseases, enable the sharing of extensive knowledge, as well as the potential ability to connect patients with other patients living with similar disorders through the help of their healthcare providers.
“We can share knowledge,” Durhane Wong-Rieger, President & CEO
Topics like advocating, partnerships within health care and industry professionals, patient and families first, and driving advances in rare diseases were all openly discussed. There were exceptional points from all sides and stakeholders. Honest feedback and recommendations seemed to be able to open up astounding discussions. In a room of 200+ people and many more attending virtually, you could feel and sense the desire and aspiration of three bodies (patients, health care and industry) ready and willing to be there for each other.
Health Canada was represented at the conference, hosting a discussion around the Drugs for Rare Diseases Strategy, bilateral and provincial health agreements, and other topics. Canadian Agency for Drugs and Technologies in Health (CADTH) was also in attendance and spoke about the potential Rare Disease Registry space, creating and maintaining that space while capturing all areas of rare disease data and possible funding opportunities in the future.
Various patient groups or individuals representing those groups attended the 2-day conference. Networking is one of my favourite aspects of these events, and the more I attend, the more I become comfortable and inclined to step out of the shadows and open new doors. Many of these patient groups are extremely small, consisting of only a few individuals. I quickly realized how fortunate those of us living with pulmonary hypertension (PH) are to have such a vast PH patient/family community, PH specialists across the Country and the Pulmonary Hypertension Association of Canada (PHA Canada) to lean on who fight alongside each of us every day. To each and every one of you, thank you!
Don’t underestimate the power of patient stories and the impact they have and are continuing to have within your local community and provincial territory. Patient voices are amplifying more than ever, and we are being heard across the country with an army of support behind us. I encourage you to speak with your local Members of Parliament (MP), take note of annual action days such as Rare Disease Day (last day of February), World PH Day (May 5th) or PH Awareness Month (November). Continue to do what you can, when you can, and know that you are making a remarkable difference.
“We may be but one voice individually, but together, we are a force that can demand action.” Jennifer Bryson, PH Patient, PHA Canada Ambassador.
I look forward to attending many more CORD Conferences and Action Days if the opportunity arises. I will continue to raise awareness of pulmonary hypertension alongside the strong and unstoppable PHighters.
Canadian Organization for Rare Diseases
Rare Disease Drug Strategy
Jennifer Bryson, Patient
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