August 14, 2014 mcfadyena

New Website Launched!

It’s official – we’ve launched!

With the approval of VIMIZIM in Canada, the first enzyme replacement therapy available for Morquio A syndrome, we’ve received many questions from across the country.  Most prevalent among them is “What’s next?”

After speaking with many families, we thought it would be helpful to put together a website with as much information as possible about Morquio A syndrome in Canada, including information about gaining access to treatment throughout the country.

As many of you know, VIMIZIM was approved by Health Canada in early July, 2014.  That approval provided hope for families that they could finally access a treatment for their disease.  Clinical trial results are incredibly promising, and patients need to have access to that therapy as soon as possible.

These patients have a new hope of a healthier future, and I’m confident the provinces will work together and in an expedited fashion to see that hope become reality.
Andrew McFadyen, Executive Director, The Isaac Foundation

I will be working with provincial governments, families, and directly with patients to ensure that reimbursement is forthcoming for VIMIZIM, and that all patients who would like access to therapy receive it.

I’ll do my best to update as much as possible.  Please check back often.

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We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Morquio A Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!