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Goal #2: Educating the Professionals

Posted Jan 11 2011 1:41am

On January 24th, I have been invited to give a web conference to all the Genzyme Case Mangers and Patient Care Liaisons.   It will share our experiences with raising a type 2/3 child, educate them on what type of support parents of neuronopathic children need (which is much different than a type 1 patient), and offer suggestions as to how they can better serve the parents of type 2 and type 3 kids.

I am so excited about this opportunity.  Finally, a chance to create awareness and understanding with those who work directly with other families!

This means so much to me on so many levels.

  • I’m proud that the people at Genzyme believe enough in what I have done so far that they want me to share it with their staff.
  • I’m proud that Genzyme realizes that families of type 2 and type 3 children need case managers and patient care liaisons who have a better understanding of this form of Gaucher’s Disease and how it differs from type 1.
  • I’m proud that (hopefully) any new family that receives this diagnosis and begins Cerezyme treatment will have case managers who can better take care of them instead of feeling lost in the Gaucher type 1 world.

This is just huge to me.   Finally, recognition that type 2/3 needs more specialized support.  Now Genzyme is taking active steps to be able to provide it to their current and future clients.

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