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Patient Tools

A total of 55 posts are filed under Patient Tools
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
Designing Effective Rare Disease Registries
by Raymond A. Huml, MS, DVM, RAC and Margaret Dean, MBA, Quintiles MS at   Rare disease research was once a neglected aspect of… Continue Reading
Join BIO Action! A New Way to Advocate
On the forefront of furthering lifesaving, landmark innovation, the biotechnology industry in 2017 promises to continue to heal, fuel and… Continue Reading
Rare Disease
Philippines Begins Drive to Help Rare Disease Sufferers
Source  [MANILA] The Philippines is ramping up efforts to develop a nationwide registry of rare diseases to provide better access… Continue Reading
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