It's taken a lot longer than I thought to get going on this post about the CORD (Canadian Organization for Rare Disorders) conference I attended last month, but here it is now.
I had attended one of their previous conferences here in Ottawa in 2014, but this time I was doing it on my own and as a representative/board member of the Joubert foundation.
The conference started fairly early on the 21st. After getting my name-tag (no Sharpie this time!) and a spot of breakfast, I found my seat. Being on my own, I was a little nervous, but a very friendly group of women from HAE (Hereditary Angioedema) Canada were nice enough to include me.
After a brief message from CORD's president, the presentations began. Most presentations and panels throughout the conference focused a lot on policy and making it easier for individuals in the rare disease community to access research and treatments.
As some of this was for potentially life-threatening conditions, I felt very out of place at times. I had initially wanted to bring up my looking for work, but felt it was in poor taste upon hearing what others were going through. Eventually, I realized that while some things may not have been applicable to me, they could benefit other people I know, so I became more active in the conference's proceedings. And there were still quite a few presentations and testimonials from patients and parents that were different and interesting.
The first speaker was a woman who works in genetics at CHEO (where I got my JS diagnosis). Her presentation was on what she called the "diagnostic odyssey", the journey individuals with rare diseases/disorders often go through to get a diagnosis, and how networks and research databanks are being set up on nation-wide and even global scales to help make the "odyssey" quicker and easier.
More geneticists and researchers spoke of the need for countries, Canada specifically, to make research and science priorities for the goals of organizations like CORD to succeed. Some specialists and patients related stories about going the extra mile to help a family overseas with a daughter with a rare bone disorder, and anecdotes about how Rasputin was the first major patient champion for Hemophilia (the czar's son had it, Rasputin figured out better treatment).
Next was what I thought was one of the most fascinating presentations of the entire event. The speaker was from B-Temia, a tech company from Quebec specializing in human augmentation. The presentation was mainly to showcase their invention the Dermoskeleton, a frame that helps the wearer with balance and support.
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| From B-Temia's website |
Then came a demonstration. A man with a degenerative muscle disorder showed the conference attendees the Dermoskeleton in action. He started by having everyone simply stand and sit back down. He stated that without the Dermoskeleton, that simple action is almost impossible for him. He went on to describe his situation, diagnosed with this disorder only a few years ago, then searching for this technology. It was so amazing!
After lunch, there was a panel discussion/webcast focused on the idea of national pharma-care, and whether or not that would make it easier to access various treatments.
The conference's first day ended with a patient and parent panel, including one of the women I was sitting with, who told her story, as well as that of some of her family members who were affected by the same disorder, and a father who spoke about trying to access assistive devices to help his daughter succeed in school and learn to advocate for herself. Unlike other stories, this one was something I could relate to, and spoke to the man afterwards.
The second day of the conference was broken up into halves. The first was devoted to a group of individuals from Health Canada, discussing changes to their policies concerning rare diseases/disorders, research, reviews and sections of their website devoted to those topics. Very applicable to Canada's Joubert community, so I made sure to get lots of notes!
As a funny aside to that, their system for reviews is nicknamed R2D2. When the moderator joked, one of the women, in all seriousness, admitted that Health Canada also has a C-3PO (related to 3D printing).
After a lunch of fajitas and churros, which was a real Mission Impossible-level task for someone like myself with dexterity issues and an addiction to Mexican food, who doesn't want to pig out and/or look weird in front of about a hundred or so people. (I made out okay, and lunch was delicious!)
That afternoon was devoted to a presentation and group activity on "Systems thinking", which emphasizes looking at the bigger picture and surrounding factors when analyzing an issue. In the case of a rare disease or disorder, it would mean looking at things like communities, school systems, or a person's income when addressing treatment.
And that was it. The CORD conference was an enlightening, and sometimes fun, experience. I'm glad I attended, and I'm very grateful to the Joubert Foundation for helping me do it and allowing me to represent them.
Cheers!
