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Advocacy at AGTC

In 2016, AGTC expanded its commitment to the inherited retinal disease community by creating our Patient Advocacy Department. We are committed to including patient voices in the development of our clinical trials and promising new therapies for rare inherited conditions in ophthalmology and otology. Building relationships with the greater advocacy community, and families and caregivers of affected individuals has allowed us to understand better their current unmet medical and psychosocial needs.

Through our partnerships, we gain valuable insights from patients about their unique journey and experiences living with rare inherited ophthalmologic conditions. Our collaborations with the patient community also equip us with the information necessary to carry out our goals of being transparent in the clinical trial design processs, providing research, education and support to patients, delivering high-value solutions throughout the patient journey and striving to be “best-in-class” in our alliances.

 

How AGTC Works with Patient Advocacy Groups:

  • Clinical trial recruitment – Educate affected individuals and families about the different phases of drug development, patient registries and the importance of their roles in developing innovative treatments
  • Clinical trial design – Learn how to design our clinical studies to be as patient-friendly and unobtrusive as possible
  • Be educated – Discover how we can more effectively drive awareness of inherited genetic conditions
  • Forging connections – Bridging gaps among inherited rare eye disease communities and rare disease organizations

If you are interested in learning more about our advocacy efforts, or wish to contribute ideas or questions, please contact us at advocacy@agtc.com or view our clinical trial resource. AGTC wants to know what matters most to you.

 

 

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