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Patient Tools

A total of 58 posts are filed under Patient Tools
Thinking Ahead
When the European Medicines Agency approved Myozyme in 2006, Genzyme’s enzyme replacement therapy for the lysosomal storage disorder… Continue Reading
Patient System to Help Diagnose People in European with Rare Diseases
Rare Daily Staff A new system developed by Irish health informatics company OpenApp for the European Commission allows secure online… Continue Reading
Kevan Chandler is Going Far
Kevan Chandler long dreamed of travelling. The problem was that many of the places he wanted to go weren’t wheelchair accessible. The… Continue Reading
Video: How Children’s Hospital of Philadelphia is Helping Leukodystrophy Patients
Leukodystrophies are inherited disorders of the white matter of the brain and spinal cord that can cause problems with movement, speaking,… Continue Reading
CD Access to Provide Special Access Program for Duchenne Muscular Dystrophy Patients in Canada
 CD Access is a new nonprofit that provides patients access to drugs and therapies that are currently unavailable through clinical trial… Continue Reading
Introducing SideEQ: A Free Tool That Helps You Manage Cancer Treatment Side Effects
SideEQ is a free, interactive platform which enables people living with cancer to track and manage their side effects so they can improve… Continue Reading
Progeria School Curriculum Is Launching!
The Progeria Research Foundation is excited to announce the creation of a middle and high school curriculum that motivates teens to believe… Continue Reading
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