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  • Kimberly
    Online Facilitator
      Post count: 4288

      Learn about #thyroideyedisease from the people who know it best: the members of our patient community who live with this debilitating condition every day. Our survey on TED collected hundreds of comments. We read every single one, and we’ve organized them by category on our website in hopes of providing doctors, researchers, family members, friends, co-workers, and fellow patients a better understanding this complex, frustrating, debilitating, isolating, and painful condition.

      BACKGROUND: In November 2023, Frontiers in Endocrinology published “How Patients Experience Thyroid Eye Disease”, which highlighted selected results from a GDATF-commissioned survey of the thyroid eye disease patient community. The published manuscript included a handful of quotes from the narrative survey responses. These comments are now available in full on our website, organized by category. This project was completed with a medical education grant from Amgen, Inc. (formerly Horizon Therapeutics).
      Thank you to the clinicians who developed the original idea for a patient survey (Dr. Terry J. Smith, Dr. Laszlo Hegedüs, Dr. Ira Lesser, and Dr. Petros Perros) to Amgen, Inc. for supporting this project, to rareLife solutions for helping us bring this project to fruition, and to everyone who took the time to share their personal experiences with us.

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