This week, I had the pleasure of attending a conference put on by the Canadian Organization for Rare Disorders (CORD) in Ottawa.
It was a two-day event centring around research, policy, politics and advocacy in relation to rare disorders. It was also my first time at an event like this.
The first day started bright and early, with me arriving at the hotel and meeting Karen Tompkins, mother of a daughter with Joubert Syndrome and my first contact within the Joubert community.
After a quick breakfast, it was down to business.
An introduction by CORD's president was soon followed by several panels and open discussions featuring geneticists, physicians, university professors, and other professionals discussing many of the topics I listed above. I have to be honest, and admit that, at first, most of the information on topics like genetics and politics went way over my head, though I was surprised by how much I remembered about political procedures and bill readings (thanks, high school Civics!). Despite some initial confusion, these panels ended up being quite informative. I especially enjoyed one that focused heavily on patient advocacy (which, I learned, is the proper term for what I'm trying to do in regards to Joubert Syndrome).
This took up most of the morning. After lunch, everyone broke into several groups for more intimate discussions of the morning's topics. Groups I sat in on included one about care and treatment of people with rare disorders, and another about to best define rare disorders in general. These were very enlightening, and I even contributed to both.
The second day was all about politics. We were divided up into small groups and tasked with talking to a few politicians in hopes that they would support a bill that would see the creation of an orphan drug registry in Canada, which would give patients easier access to drugs and treatments. Karen had to catch a flight home that morning, so I was on my own this time. At first I was nervous and debated going home early, but after some reassuring words from one of the conference's organizers I decided to suck it up and participate in the day's events.
We were very well-received by the politicians we met, and they were quite interested in each of our individual stories. One of them was even familiar with Joubert, which really impressed me. Afterwards, a quick debriefing and lunch capped off the conference.
For me, the highlight of the two days was the people. I met so many people with such a wide variety of conditions, many of which I had never even heard of before (my Google browser has never seen so much action). It was very eye-opening to hear about everyone's personal experiences. I even had a few good networking opportunities, including a lead on a possible advocacy opportunity at my former pediatric hospital. I was also fortunate to meet a young woman around my age who is also interested in patient advocacy.
Overall, the conference was a great learning experience and exposed me to a more professional side of advocacy. I've already been asked if I will be attending CORD conferences in the future, and I am definitely considering it.
Big thanks to Karen Tompkins for suggesting that this would be a good opportunity for me. It certainly was.
