A groundbreaking awareness campaign to change the future of Usher syndrome
“Every Second Counts” is a call to action and a vivid exploration into the lives of those affected by Usher syndrome, a rare genetic disorder causing the progressive loss of combined deafness and blindness.
Read This story is one of those that must be told.
In great detail.
In 2017, before the summer, I got a phone call.
Read Orignal Post here
ProQR Announces Positive Results from Clinical Trial of QR-421a in Usher Syndrome and Plans to Start Pivotal Trials QR-421a demonstrated a concordant benefit in multiple measures of vision, including best corrected visual activity (BCVA), static perimetry, and retinal imaging (OCT)
QR-421a observed to be well tolerated with no serious adverse events reported
Two pivotal Phase 2/3 trials are expected to start by the end of 2021
Management to host a conference call today at 8:15am EDT LEIDEN, Netherlands & CAMBRIDGE, Mass.,
Read Watch the video presentation with Caption or in ASL here
You can also download the script.
Presentation Summary:
A presentation updating the Usher community of ProQR’s continued clinical progress.
Read Transcript of the presentation during USH2020Connections Week, organized by the Usher Syndrome Coalition.
Watche the video presentation here, with caption or ASL.
Read by Mark Dunning
Original article appeared on Usher Syndrome Coalition Website
Thanks to genetic testing, we are now able to identify children with all types of Usher syndrome at a much younger age.
Read International
Usher Syndrome Coalition. The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness.
Read It is important to create an Usher Syndrome Community because we need to join efforts, resources and ideas and address them in one direction to have a stronger impact.
Read Do you remember the story of Lizzy?
She is the little girl from Ohio with Usher Syndrome that in 2016 was all over the news because she was able to meet Pope Francis, as one of her Bucket List wishes.
