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Patient Tools

A total of 43 posts are filed under Patient Tools
Guide to Donating Blood: What to Know Before You Go |
Thanks to for sharing this piece. Donating blood can be a scary thought. The idea of the needle alone might make you squirm and… Continue Reading
World’s Largest-Ever Study of SYNGAP1 (MRD5) Launches
Bridge the Gap – SYNGAP Education and Research Foundation has launched the largest-ever study to research SYNGAP1 that causes… Continue Reading
Vote Now for MyGene2 in the Open Science Prize!
  MyGene2 is a free, family-friendly platform for families with rare diseases, clinicians, and researchers to publicly share health and… Continue Reading
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
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