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First Thyroid Eye Disease (TED) Awareness Week to Increase Education and Understanding of Vision-Threatening Disease

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TED Today, a daily, online video series shares motivational stories from the TED community and useful resources to help people along their TED journey

Today marks the start of the first-ever Thyroid Eye Disease (TED) Awareness Week, taking place from Nov. 16 to Nov. 20, to increase awareness of TED – a serious, progressive, and vision-threatening rare autoimmune disease.  TED Awareness Week has been established through a collaboration among Horizon Therapeutics and advocacy organizations including the American Autoimmune Related Diseases Association (AARDA), the Alliance for Eye and Vision Research (AEVR), the Graves’ Disease and Thyroid Foundation (GDATF), and Prevent Blindness.  Each organization is committed to the TED community and has a variety of activities planned, including the sharing of educational information and resources throughout the week.

While TED most commonly occurs in people with Graves’ disease, it is a separate disease that can occur without the presence of Graves’ disease and requires a different treatment approach.1,2,3  Symptoms may include eye grittiness, redness, swelling and pain, light sensitivity, eye bulging, double vision and facial disfigurement.1,2  TED is a rare disease that is often misunderstood and misdiagnosed, so it is critical to educate people who are at risk for TED so that they can better recognize the symptoms, know how to find a TED Specialist, and feel empowered to get the support and care they need.  It is also critical to educate the public about TED so that everyone can be supportive of those impacted by this disease.

To commemorate the first TED Awareness Week, Horizon is launching TED Today, a daily, online talk show designed to educate, empower and entertain viewers by delivering valuable information from a variety of perspectives, including TED patients, caregivers, and specialists.  TED Today will be posted to the Listen to Your Eyes Facebook community page each morning during TED Awareness Week.  TED Today will focus on a range of topics relevant to the TED community, including the critical role of the caregiver, building a strong care team, learning to be your own best advocate, and maintaining positive mental health while living with TED.  TED Today will also feature patient advocacy organization interviews and information advising patients and caregivers where they can find important online resources, including a tool for tracking symptoms and a TED Specialist Finder.

“When I was diagnosed more than five years ago, I didn’t know where to turn and felt isolated living with a rare disease,” said Beatriz Mallory, Thyroid Eye Disease patient advocate and co-host of TED Today.  “I’m honored to participate in this important event, share my experience and hear the inspirational stories of others.  I hope that our actions to educate and raise awareness of Thyroid Eye Disease this week and beyond will help motivate people who are living with or are at risk for developing this debilitating disease to advocate for themselves, find a community, and get the support and care that they deserve.”

“At Horizon, we are focused on addressing the needs of patients living with rare diseases, including Thyroid Eye Disease, not only with therapies, but also by providing tools and resources to help patients actively manage their disease and improve their experience,” said Tim Walbert, chairman, president and chief executive officer, Horizon.  “Through our collaboration with AARDA, AEVR, GDATF and Prevent Blindness, we are encouraging patients, physicians and advocates to continue sharing personal stories and educating about Thyroid Eye Disease with the hope of shedding light on this truly life-altering disease.  We are proud to support the first Thyroid Eye Disease Awareness Week and look forward to establishing it as an annual milestone.”

Find additional information about TED at ThyroidEyes.com, and visit the AARDA, AEVR, GDATF and Prevent Blindness websites for more information about our advocacy collaborators.

About Thyroid Eye Disease (TED)

TED is most often seen in patients with Graves’ disease – affecting up to half of people with Graves’ – but it is a distinct disease that requires separate treatment.1,2,3  A diagnosis of TED may even precede a finding of Graves’ and can serve as an early warning sign of future thyroid dysfunction.4  TED can also occur in Hashimoto’s hypothyroidism or even in patients with neither diagnosis.3  Common symptoms of TED include light sensitivity, eye grittiness, bulging eyes and double vision, among others – all of which can reduce a person’s independence, ability to work and self-confidence.5,6  In fact, people living with TED often experience long-term functional, psychosocial and economic burdens, including inability to work and perform activities of daily living.6,7

About AARDA

American Autoimmune Related Diseases Association (AARDA) is the nation’s only nonprofit organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women’s health issue, promoting public awareness, patient education and support, advocacy, and collaborative research efforts to promote better treatments and a cure for all autoimmune diseases.  For more information, visit www.aarda.org.  Follow us on social media: Facebook (www.facebook.com/Autoimmunity), Twitter (@AARDATweets), Instagram (@autoimmune_diseases), and YouTube (www.youtube.com/AARDATube).

About AEVR

The Alliance for Eye and Vision Research (AEVR), a 501(c)3 non-profit foundation, conducts sustained educational efforts about the value of federally funded vision research primarily through its Congressionally recognized Decade of Vision (DOV) 2010-2020 Initiative.  Within the DOV, AEVR conducts Congressional Briefings, including a November 19, 2020, virtual global Briefing that recognizes the first annual TED Awareness Week.  Visit the Web site at www.eyeresearch.org.

About the Graves’ Disease and Thyroid Foundation

The Graves’ Disease and Thyroid Foundation (GDATF) is the leading source of help and hope for people with Graves’ disease and other thyroid related disorders.  The organization provides education and support for patients, family members, caregivers, friends and healthcare professionals.  GDATF has helped thousands of patients better understand the symptoms and treatment programs for Graves’ disease.  The Foundation is a 501 C(3) tax-exempt non-profit international charitable organization.  For more information visit www.GDATF.org, and find us on Twitter (@GDATF), Facebook and Instagram.

About Horizon

Horizon is focused on researching, developing and commercializing medicines that address critical needs for people impacted by rare and rheumatic diseases.  Our pipeline is purposeful: we apply scientific expertise and courage to bring clinically meaningful therapies to patients.  We believe science and compassion must work together to transform lives.  For more information on how we go to incredible lengths to impact lives, please visit www.horizontherapeutics.com and follow us on Twitter, LinkedIn, Instagram and Facebook.

References

  1. Lazarus JH. Epidemiology of Graves’ orbitopathy (GO) and relationship with thyroid disease. Best Pract Res Clin Endocrinol Metab. 2012;26(3):273-279.
  2. Smith TJ, Hegedüs L. Graves’ Disease. N Engl J Med. 2016;375(16):1552-1565.
  3. Eckstein AK, Losch C, Glowacka D, et al. Euthyroid and primarily hypothyroid patients develop milder and significantly more asymmetrical Graves’ ophthalmopathy. Br J Ophthalmol. 2009;93(8):1052-1056.
  4. McAlinden C. An overview of thyroid eye disease. Eye Vis (Lond). 2014;1:9. doi:10.1186/s40662-014-0009-8.
  5. Barrio-Barrio J, Sabater AL, Bonet-Farriol E, Velazquez-Villoria A, Galofre JC. Graves’ Ophthalmopathy: VISA versus EUGOGO Classification, Assessment, and Management. Journal of Ophthalmology. 2015:1-16.
  6. Ponto KA, Pitz S, Pfeiffer N, Hommel G, Weber MM, Kahaly GJ. Quality of life and occupational disability in endocrine orbitopathy. Dtsch Arztebl2009;106:283-299.
  7. Ponto KA, Merkesdal S, Hommel G, Pitz S, Pfeiffer N, Kahaly GJ. Public health relevance of Graves’ orbitopathy. Journal of Clinical Endocrinology & Metabolism. 2013;98:145-152.

Download a copy of the Thyroid Eye Disease (TED) press release.