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Patient Tools

A total of 40 posts are filed under Patient Tools
Introducing the FirST-4-LEMS Study
Your participation can help change the lives of people with Lambert-Eaton Myasthenic Syndrome (LEMS.) As someone living with LEMS and… Continue Reading
Caregiving Tips for the Holidays
Caregiving at any age is challenging at times.  Being responsible for the medical, emotional, and  financial care and well being of a… Continue Reading
Rare Disease Comic Book Series Created by Cystinosis Patient and Artist
The Cystinosis Research Network (CRN), a Chicagoland based non-profit organization, has teamed up with an artist to create a simple… Continue Reading
Rare Disease Community Joins to Launch the Collaborative Trajectory Analysis Project Advancing Clinical Trial Design for DMD
The next wave in tackling Duchenne Muscular Dystrophy is getting a boost from a collaboration of nonprofit organizations, biopharmaceutical… Continue Reading
Second Grader Hopes to Stay Connected Socially Despite Rare Disease
PECATONICA “Well, I like to do tumbling and I like cheer, and I like playing with my friends and running,” said Ariyah Rovinski, 7. All… Continue Reading
FindaCure Launches New Online Portal
To add to many of their exciting online projects this year, FindaCure has launched a new online portal to give patients, advocates and… Continue Reading
A New Drug for Acomegaly Patients? MPowered Offers Oral Alternative
  CLINICAL TRIAL OF AN ORAL ALTERNATIVE If approved as the first oral somatostatin analog treatment for acomegaly, octreotide capsules may… Continue Reading
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