The FDA was holding a hearing to determine if it would approve the first and only medicine to treat Thyroid Eye Disease (TED), a rare autoimmune eye condition that can severely impair vision. AARDA, along with many other patient advocacy organizations attended to make the case for our community. We asked for your personal stories, experiences, and perspectives on living with TED to share with the FDA. Our statement acknowledged the suffering caused by TED and the life-changing importance of a potential new treatment. We heard your comments and they were compelling. AARDA was honored to deliver your words, in your voice, in our statement to the FDA.
Last week the FDA approved that breakthrough drug, TEPEZZA, with the potential to prevent permanent eye damage, pain, and disfigurement.
As autoimmune diseases cluster in people and in families, this is a breakthrough for the entire autoimmune disease community. This drug is the start of better treatment and improved quality of life for people whose vision is threatened by TED. As we’ve seen with other medications, this can also lead the way for new treatments for other autoimmune diseases that impact the eyes.
Thank you to everyone who shared their stories, their struggles, and their journeys with us. With your help, there is new hope.
Those who participated were contacted through ARNet. With permission given to AARDA to contact them and share their stories.