Enrolling USH1B Patients for the Uni-Rare Natural History study launched by the The Foundation Fighting Blindness: A critical and necessary step for upcoming clinical trials and future therapies.

Uni-Rare is a Natural History Study of vision loss progression. It is a critical and necessary step in supporting the approval of upcoming clinical trials and future therapies. It is sponsored by the Foundation Fighting Blindness and it is a new study of ∼1500 people with one of 300+ rare genes associated with inherited retinal diseases (IRDs).

Why is this study so important for finding an USH1B treatment?

  • This information is crucial for deciding if a treatment is effective and if it will ultimately progress through clinical trials and be approved by the FDA.
  • Without this information, companies will not invest their time and money into discovering new treatments and funding clinical trials.

Who can enroll?

  • Be at least 4 years old.
  • Have a clinical diagnosis of retinal disease. 
  • Have a rare IRD gene with at least 1 mutation that is the cause of the retinal disease.
More info: NIH site Clinicaltrials.gov or Uni-Rare Coordinating Center: Tel. 813-975-8690 / Email: ffb@jaeb.org

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