Sponsored USH1B Research Workshop
This is A Big Deal
We have some exciting news we'd like to share. The Foundation Fighting Blindness is hosting an USH1B Workshop September 13th. This is a rare occurrence where the world’s leading USH1B researchers, clinicians, patient advocates and pharmaceutical companies will be gathering online for a working session – discussing and sharing their latest findings in an effort to accelerate therapeutic treatments.
Save Sight Now is supporting and participating in this event and will be there to speak directly with researchers, gather the latest information on therapeutic approaches and identify new Save Sight Now funding targets based on the outcome of this workshop.
The goals of the Workshop are to review the Usher 1B landscape, energize the clinical and research community through shared learnings, and identify knowledge gaps for future work. The agenda will include a roundtable on emerging therapies with representatives from major pharmaceutical companies. They also want to hear from affected individuals and their families in order to ensure their perspectives for care, treatment and therapies inform both research and clinical studies.
This event is available for all to attend virtually. The FFB and Save Sight Now are strongly encouraging anyone impacted by USH1B to register for the webinar and take the anonymous survey prior to the workshop on September 13th. Survey here: https://www.surveymonkey.com/r/QGJ52KK
To our Usher syndrome community: Representation equals research motivation
As a Rare Community we need to demonstrate our support by showing up for significant efforts like these if we expect the research community to continue to invest time and money into finding a treatment. This is your opportunity to participate, have input and learn about the latest therapeutic strategies from the world's leading researchers. Please share or forward this to anyone who might be interested. If you have any questions, please feel free to reach out.
Workshop Information
Foundation Fighting Blindness Statement & Information
Take Pre-Workshop Survey
Perspectives of Caregivers and Affected Individuals With Usher Syndrome Type 1B (Ush1b)
Register now for workshop webinar:
https://fightingblindness-org.zoom.us/webinar/register/WN_EKR_iaT9SAur6Y1LVKMDKA
If you have any questions about the workshop registration, please email:
Leilla Kenney: lkenney@fightingblindness.org