16
Apr
2014
Woman with Rare Disease Protests at NB Legislature to get Treatment
Getting Treated
Written by CAP   

Still struggling to receive the same treatment that patients in other provinces receive, Annette Sebey of Perth-Andover, New Brunswick, celebrates International Pompe Day in front of the NB Legislature.

Story in the Telegraph Journal

 
03
Mar
2014
Update from Genzyme on neoGAA Pompe clinical development program 11th February 2014
Research & Studies
Written by CAP   

Genzyme is in the early stages of investigating a next generation enzyme replacement therapy (neoGAA) for Pompe disease. It differs from the original ERT, whereby carbohydrates are bonded onto the enzyme during the complex manufacturing process of neoGAA. These carbohydrates are thought to help the enzyme enter the muscles more efficiently. Though it’s still very early in the development process and there are many unknowns, the hope is that through this more efficient uptake into the muscle cell, neoGAA might improve on the effectiveness of the existing therapy.

Source: Patient Group Relations, Genzyme

 
23
Mar
2014
Balance - March 2014
Publications
Written by CAP   

The March 2014 issue of Balance is out.

Balance is published three times a year by the BC Association for Individualized Technology and Supports for People with Disabilities (BCITS).

 
28
Feb
2014
Rare Disease Day 2014 from CAP
Events
Written by Brad Crittenden   

Happy Rare Disease Day everyone! What are you doing for Rare Disease Day? There are events happening all over the world.

 
 

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