With everything COVID 19-related, I almost forgot about writing this.
March 9th and 10th, I attended CORD's (Canadian Organization for Rare Disorders) Rare Disease Day Conference, representing the Joubert Foundation.
Monday was an incredibly early day. I had booked Para Transpo for a 6:30 am pick-up and the driver arrived at 5:45! Thank goodness there was a Tim Horton's next to the hotel where the conference was being held at! Made for a nice extra-long breakfast and time to finish a book I'd been reading.
Later that morning, I picked up my name tag and talked to a few people I remembered from the last conference I attended before sitting with a local woman I knew from a parent group I spoke to years earlier.
Along with the usual panels about research, policy, and pricing of treatments, this conference added a couple new topics for discussion. The first was about data sharing and adjusting privacy laws to make that sharing easier, which was echoed by several speakers from CHEO, including Dr. Kym Boycott, the geneticist who diagnosed me with Joubert syndrome.
Another new topic was the psycho-social effects of illness, diagnosis, treatment, etc. on rare disease/disorder patients, something I found very interesting, and would have loved to have heard more about.
Over the lunch break, CORD was doing a series of short videos as part of Fight for our Lives (link), an initiative in favour of fair pricing for medication and treatments. I was asked to participate, so I got in front of the camera. For about thirty seconds, I said who I was and who/what I was representing, then I talked a little bit about Joubert syndrome.
The last bit of the video was harder to think about and took a couple tries to get right. I was asked about what I wanted to make the government aware of, in terms of JS. While other people had very specific "asks" related to funding and specific types of treatments or research, mine was a more generalized message for our politicians, to simply be aware of Joubert syndrome itself and remember that everyone is different, so there's no one specific approach when dealing with rare disorders and those who have them.
After the break, there were a few more panels. One woman from Alberta spoke about about a program called Well On Your Way (link), set up to assist young individuals, as well as their parents and healthcare professionals, in the transition from pediatrics to adult heath care. These programs focus on self-advocacy, mental health, independence and other related areas. Very fascinating and applicable to my own life and even things I've done with the Joubert group!
The second day was much like the first, with the exception of a brief gathering in front of Parliament Hill, which I didn't attend due to that day's bad weather.
The day ended with a two-hour wait for Para Transpo. In that time, I had one doughnut, one bottle of Coke, at least six people asking me if I was waiting for a cab, and a couple conversations with a doorman who felt way too sorry for me.
If I attend another CORD conference when it's here in Ottawa, I'm just going to go ahead and book a hotel room for Monday overnight. Saves a lot of trouble with Para, and it could be a nice little mini vacation!
One again, thanks to the JSRDF Board and Foundation for letting me represent!
Cheers
