December 21, 2007 mcfadyena

The Connection, Winter Issue

I copied the below out of the Winter issue of the Canadian MPS Society’s newsletter, The Connection:
Support Patients with Rare Disorders in their Fight for Life-Saving Therapy
“Canada is the only developed country without an “Orphan Drug Policy” so Canadians with rare disorders are denied access to therapies available in other countries. There are up to 6,000 rare disorders affecting nearly 10% of the Canadian population. Thanks to advances in science, some disorders can now be treated so patients live longer and have improved quality of life.
We need your help to get governments to put in place an “Orphan Drug Policy.” Your support is urgently needed to assure that Canadians with serious and life-threatening rare disorders get the same chance for life as those with more common disorders. A letter of support is available on the website of the Canadian Organization for Rare Disorders (”
I sent in a letter myself, and it can take as little as a few minutes. All you have to do is click on the link at the top of the home page, fill in your name and address and the site will tell you who your local MP is. It then gives you a generic letter that you can submit as is, or you can edit it as you wish. It is actions like this that make change, so if you can take 2 minutes to send in a letter that will save lives, possibly Trey’s, we would appreciate it.
How can an ODP help Trey? If this new Intrathecal Therapy for MPS II gets approved for use, and Trey needs it for spinal cord compression he may one day experience, or if another treatment becomes available, an ODP means that we will not have to fight tooth and nail to get the treatment for Trey. We will not have to wait months, while Trey’s disease progresses, to see if the treatment will be funded. We will not have to fight for new treatments like we had to fight for Elaprase.


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