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Patient Tools

A total of 46 posts are filed under Patient Tools
For Patients: Are You Getting the Most Out of Your Doctor Appointment?
By Annie Achee   Wondering how you can get the most out of your doctor appointment? Follow these simple steps.   1) If you think you’ll… Continue Reading
How to Pack for an Extended Hospital Stay
For many rare disease patients, the thought of a long hospital stay can bring up a lot of emotions—despair, fear, even the stirrings of… Continue Reading
Penn Medicine Explores ResearchKit’s Potential for Studying Rare Disease
[SOURCE: Mobi Health News] In a first for the University of Pennsylvania Health System, Penn Medicine launched a new ResearchKit app today… Continue Reading
Guide to Donating Blood: What to Know Before You Go | FIX.com
Thanks to FIX.com 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
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