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RARE Patient Advocacy Virtual Summit

RARE Patient Advocacy Virtual Summit

Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. Due to the COVID-19 global pandemic, and the threat this poses to the health and safety of our rare disease community, we are replacing this highly-anticipated event with the Global Genes LIVE! A RARE Patient Advocacy (un)Summit.

Throughout September, a variety of interactive and educational online events, meet-ups, workshops and performances will provide members of the rare disease community with opportunities to connect and engage with each other. Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can implement immediately to accelerate change.



September 15-25, 2020



Virtual Event

Sep 15, 2020
New Topline TEPEZZA® (teprotumumab-trbw) Data Underscore Its Efficacy In Longer Disease Duration, Long-Term Durability And Potential For Retreatment In People Living With Thyroid Eye Disease (TED)

New Topline TEPEZZA® (teprotumumab-trbw) Data Underscore its Efficacy in Longer Disease Duration, Long-Term Durability and Potential for Retreatment in People Living with Thyroid Eye Disease (TED)

Horizon Therapeutics plc announced positive topline data from two clinical trials that add to the growing body of evidence supporting the efficacy and safety of TEPEZZA® (teprotumumab-trbw) for the treatment of Thyroid Eye Disease (TED). TEPEZZA is the first and only medicine approved by the U.S. Food and Drug Administration (FDA) for the treatment of TED – a serious, progressive and vision-threatening rare autoimmune disease.

The OPTIC Phase 3 confirmatory clinical trial and the OPTIC-X open-label extension clinical trial are part of Horizon’s development program to evaluate the safety and efficacy of TEPEZZA in people living with TED. The OPTIC Phase 3 confirmatory clinical trial included a 24-week treatment period and a 48-week off-treatment follow-up period. The OPTIC 24-week treatment period evaluated patients who received TEPEZZA or placebo once every three weeks for a total of eight infusions.

Jul 31, 2020
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