Today is Rare Disease Day, which is a world wide event and is celebrating its 10th anniversary this year. Sadly in Canada this day doesn't
mean much, even though Canada has been taken part of Rare Disease Day since its 1st year according to the website. Rare Disease Day
Unlike other countries who have many organizations representing people living with rare conditions, we have one organization in Canada to represent all Canadians living with a rare condition. I have monitored the CORD organization for many years now. I even contacted them a few years ago, but they are not interested in helping a condition such as the one I have. Which makes me question their mandate for saying they represent All Canadians with rare conditions? Yet they pick and choose which ones they are supporting?
If your mandate is all then why don't all conditions count? As it was explained to me if my condition had an official organization then there would be more they could do, there are many rare conditions who don't have an official organization I thought that was the purpose of CORD to be the voice for all, especially those that don't have an organization for their condition? If it just me that is confused by that responds?
Unlike other countries who have many organizations representing people living with rare conditions, we have one organization in Canada to represent all Canadians living with a rare condition. I have monitored the CORD organization for many years now. I even contacted them a few years ago, but they are not interested in helping a condition such as the one I have. Which makes me question their mandate for saying they represent All Canadians with rare conditions? Yet they pick and choose which ones they are supporting?
If your mandate is all then why don't all conditions count? As it was explained to me if my condition had an official organization then there would be more they could do, there are many rare conditions who don't have an official organization I thought that was the purpose of CORD to be the voice for all, especially those that don't have an organization for their condition? If it just me that is confused by that responds?
I also look each year at the
cities that participate in Rare Disease Day in Canada hoping to see more doing so each year. We have 10
provinces and 3 territories with a total population of 36,626,083 last time I
looked. Another statistic if you are interested 1 in 12 persons in Canada
fall under the rare disease category according to Health Canada's Website on Rare Conditions. Yet only two provinces participate
in any sort of representation of Rare Disease Day, Ontario and BC. And in a very small way.
When I tried to
contact our local organization for Manitoba's who live with disabilities as
some know they could not even answer a simple question as to what they do and
what programs do they offer as per their website. Never mind asking
them to help championing our city or province to acknowledge Rare Disease Day. I am only one person who can't even reach
others who live with rare conditions, due to privacy issues. If someone knows how to make this happen
please enlighten me. My letters go
unanswered, I have contacted our government, the College of Physicians, and my city's area councilor. But I guess we are not
important enough but someone has to take up the cause and I will keep
fighting until I no longer can.
Maybe to the
average person reading this this might not mean much. I'll be honest until I became a
person who falls into this unfortunate category I too never gave it much thought,
other than thank god I was an able bodied person. We care more about what
the latest celebrity is doing. Where our
friends and family are going on holiday's.
Or other situations happening in other countries.
So today I am asking you instead of talking about the regular conversations you may have. Why not have a conversation regarding rare disease's. There are depending on where you look between 6000 to 7000 known rare conditions in the world. Why not talk and learn about at least one today. I'll help you out you can learn about Stiff Person Syndrome (thank you to all my friends who send me information but yet never read the information yourself you can help me by reading it yourself I live with it every day and am well aware of how it affect my life), Isaac Syndrome, Sclerodema or one of the countless others. Make today the day to learn something new and maybe help in understanding someone, you or spouse or children know.
So today I am asking you instead of talking about the regular conversations you may have. Why not have a conversation regarding rare disease's. There are depending on where you look between 6000 to 7000 known rare conditions in the world. Why not talk and learn about at least one today. I'll help you out you can learn about Stiff Person Syndrome (thank you to all my friends who send me information but yet never read the information yourself you can help me by reading it yourself I live with it every day and am well aware of how it affect my life), Isaac Syndrome, Sclerodema or one of the countless others. Make today the day to learn something new and maybe help in understanding someone, you or spouse or children know.
Maybe next year I can get someone to care enough about those of us
in Manitoba living rare to acknowledge us for one day! Surely with a population
of 1,208,912 and 1 in 12 living with a rare condition then one day for us is
not such a big ask?
Celebrate Rare Disease Day!
Here is a list of the events our wonderful county is doing! So proud of all we do (she says in jest)! Canada let's truly live up to the slogan of Alone we are rare. Together we are STRONG! http://www.rarediseaseday.org/event/canada/1678
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