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by Australian Pompe category: Cause
Australians with rare and life threatening Pompe disease need your help.
Pompe disease is a rare genetic disease that breaks down muscles, putting people in wheelchairs, on ventilation, and eventually kills.
Despite it being available in over 50 other countries, Australia is falling behind and only funds treatment for those diagnosed in infancy. Those left with no access to the enzyme replacement therapy that saves lives include a 12 year old Melbourne boy.
Australians urgently need access to treatment
Australian Pompe’s Association is a patient run organisation supporting each other and our families impacted by Pompe disease. We are fighting for our lives and the lives of other Australians with Pompe disease.