Although every year has a Rare Disease Day (or every year since its inception in 2008), 2016 was a notable Rare Disease Day for the FOP community, and especially for the Canadian FOP Community.
February 29, 2016, Clementia Pharmeceuticals announced the completion of its phase 2 clinical trial (if you didn’t know this, here’s the press release) and the Ontario government actually raised awareness of Rare Disease Day in its parliament session, tabling a motion to officially recognize the last day of February as Ontario Rare Disease Day.
Thanks to CFOPN’s partnership with CORD, and the fact that I’m of age and live in Toronto, I went to Queen’s Park on Rare Disease Day to watch parliament and attend a luncheon CORD hosted for the MPPs.
I should warn you, just in case you ever get invited to go to parliament: Queen’s Park is not very accessible. There is a wheelchair-accessible entrance on the south side, but if you’re going to witness a parliament session, the members’ gallery (that’s the first floor) is up a flight of stairs and the seating on the fourth floor is up a steep flight of stairs then down a steep flight of stairs. After taking me to the first and fourth floors, they took me to the pretty empty third floor, which happened to be much less treacherous. Why they didn’t have this better planned out considering the nature of the visit, I’ll never know. It worked out, though. (As we were going back and forth in the elevator, one of my guides apologized for the confusion and constant moving and I laughed and said, “Actually, this is pretty standard for my life.”)
After the parliament session the Canadian Organization for Rare Disorders (CORD) hosted a lunch for the parliament members. Mid-lunch, Health Minister Dr. Eric Hoskins gave a speech detailing Ontario’s current plan to create a coordinated provincial healthcare system in order to increase progress and access for people living with rare diseases, based on the working group created for Ehlers Danlos Syndrome. He was very willing to admit, though, that “There’s a lot of work to be done.”
(Breaking news this morning says parliament couldn’t agree on a system to use to create a rare disease strategy, with the Conservatives criticizing the working group concept as “behind closed doors” and Liberals striking down a Conservative motion to create an all-party committee. It’s nice to see they’re in no rush to amend our faulty rare disease laws. What’s the hurry? People with rare diseases live long, full lives. No, wait…)
Later on, right next to me, this reporter remarked to his cameraman that he wanted to talk to people with rare diseases but wasn’t sure who they were. I decided to be nice and said hi. He asked if he could ask me a few things and I said, “Why do you think I introduced myself?” He then asked me some questions and took a few quotes from me. It was fun watching him try to guess-spell Fibrodysplasia Ossificans Progressiva.
I would like to say that our presence made a real impact and impressed upon the politicians the need for a rare disease strategy, but the reality is that the concept needs to be developed in such a way that no politician can squawk about how a different plan is the better option and we should just go back to the drawing board...which is depressing for so many reasons. And again my mind goes here:
February 29, 2016, Clementia Pharmeceuticals announced the completion of its phase 2 clinical trial (if you didn’t know this, here’s the press release) and the Ontario government actually raised awareness of Rare Disease Day in its parliament session, tabling a motion to officially recognize the last day of February as Ontario Rare Disease Day.
Thanks to CFOPN’s partnership with CORD, and the fact that I’m of age and live in Toronto, I went to Queen’s Park on Rare Disease Day to watch parliament and attend a luncheon CORD hosted for the MPPs.
I should warn you, just in case you ever get invited to go to parliament: Queen’s Park is not very accessible. There is a wheelchair-accessible entrance on the south side, but if you’re going to witness a parliament session, the members’ gallery (that’s the first floor) is up a flight of stairs and the seating on the fourth floor is up a steep flight of stairs then down a steep flight of stairs. After taking me to the first and fourth floors, they took me to the pretty empty third floor, which happened to be much less treacherous. Why they didn’t have this better planned out considering the nature of the visit, I’ll never know. It worked out, though. (As we were going back and forth in the elevator, one of my guides apologized for the confusion and constant moving and I laughed and said, “Actually, this is pretty standard for my life.”)
After the parliament session the Canadian Organization for Rare Disorders (CORD) hosted a lunch for the parliament members. Mid-lunch, Health Minister Dr. Eric Hoskins gave a speech detailing Ontario’s current plan to create a coordinated provincial healthcare system in order to increase progress and access for people living with rare diseases, based on the working group created for Ehlers Danlos Syndrome. He was very willing to admit, though, that “There’s a lot of work to be done.”
(Breaking news this morning says parliament couldn’t agree on a system to use to create a rare disease strategy, with the Conservatives criticizing the working group concept as “behind closed doors” and Liberals striking down a Conservative motion to create an all-party committee. It’s nice to see they’re in no rush to amend our faulty rare disease laws. What’s the hurry? People with rare diseases live long, full lives. No, wait…)
Later on, right next to me, this reporter remarked to his cameraman that he wanted to talk to people with rare diseases but wasn’t sure who they were. I decided to be nice and said hi. He asked if he could ask me a few things and I said, “Why do you think I introduced myself?” He then asked me some questions and took a few quotes from me. It was fun watching him try to guess-spell Fibrodysplasia Ossificans Progressiva.
I would like to say that our presence made a real impact and impressed upon the politicians the need for a rare disease strategy, but the reality is that the concept needs to be developed in such a way that no politician can squawk about how a different plan is the better option and we should just go back to the drawing board...which is depressing for so many reasons. And again my mind goes here:
Ottawa cohort, you're up. Go convince the federal government that rare diseases are so important the federal government should force the provincial government to stand up. Show them pictures of sick babies crying while holding kittens or convince them the only way to stave off an interdimensional alien attack is to properly treat rare diseases.
(I am only partially kidding.)
Ottawa cohort, you're up. Go convince the federal government that rare diseases are so important the federal government should force the provincial government to stand up. Show them pictures of sick babies crying while holding kittens or convince them the only way to stave off an interdimensional alien attack is to properly treat rare diseases.
(I am only partially kidding.)
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