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Café Scientifique - The Rare Disease Next Door

By Isabel Jordan – January 11, 2012
Isabel Jordan

Café Scientifique is where you can have a drink and learn about the latest ideas and issues in science and technology in an informal setting. It’s not a lecture! It’s a place for group discussion and audience involvement is the most important ingredient.

Go to http://cafe-rare.mcgill-cihr-ig.ca/ to join the webcast discussion

Being diagnosed with a rare disease, such as an uncommon genetic disorder or an unusual infectious or autoimmune disease, can be a
lonely and frightening experience. Because of their rarity, these illnesses are often poorly understood, and don't generally inspire big fundraising campaigns in the same way that more common diseases do. As a result, the people affected by rare diseases often feel abandoned.

But that could change. When you consider the cumulative impact of the thousands of rare diseases, they add up to one big health care challenge, as they could affect up to 10% of the Canadian population. Advances in technology, such as next-generation DNA sequencing, are offering hope to patients. As we translate these findings into a personalized approach to medicine, there may be a lot more we can do to help people who suffer from uncommon illnesses.

Go to http://cafe-rare.mcgill-cihr-ig.ca/ on Wednesday January 11th to register and join the webcast and the conversation.

 

About the author

Isabel Jordan

I'm the mom of two children; my oldest has been diagnosed with a ultra-rare or unique disorder. I've always done a lot of volunteer work at a variety of non-profit groups and right now I'm co-chair…

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Rare Disease Foundation and rare disease in the media.


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