TED Community Organization

TED Community Organization is comprised of patients, caregivers, medical professionals, and individuals who advocate for those dealing with Thyroid Eye Disease (TED). In essence, we are a community of individuals who have the shared living experience of TED.

As a dedicated Thyroid Eye Disease (TED) 501c3 nonprofit, our vision and quest is to ensure that no one need ever walk alone through the arduous and often isolating TED journey. To this end, we provide education, support, and connection for all who are affected by TED.

making peace with thyroid eye disease TED

“Making Peace with TED” is the subject of a TED ART project.

Front. Endocrinol., 09 November 2023

How patients experience thyroid eye disease

A study led by Dr. Terry Smith, Kellogg Eye Center, Department of Ophthalmology and Visual Sciences and Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI, United States

The findings reported here reveal a perception among patients that some physicians lack an awareness of TED and fail to recognize the signs, symptoms, and negative impact of this disease on QoL. These shortcomings likely underlie, at least in part, the unmet needs of patients with this disfiguring and potentially sight-threatening disease. The persistence of important and bothersome disease manifestations clearly impacts activities of daily life, regardless of disease duration. It is essential that physicians and other healthcare professionals who are treating TED become more familiar with patient experiences such as those described here. Results from our survey should invigorate the importance of long-term follow-up and management of patients. Their healthcare providers need to better accommodate the needs of these patients and improve their journey with TED.

Read the full research article here.

Interview with Dr. Terry Smith by TED EDU host Dr. Layla Lohmann

This study received funding from the Graves’ Disease and Thyroid Foundation through an educational grant from Horizon Therapeutics, USA (Grant number 2022-00035). Horizon was not involved in the study design, collection, analysis, interpretation of data, the writing of this article or the decision to submit it for publication.
Rare Revolution Magazine

Summer 2023 Print & Digital Edition
Informative TED Articles made possible by Viridian Therapeutics

thyroid eye disease doctors perspective rare revolution article

The last five years have seen great strides made in the management of TED, and the next five years look to be equally exciting for the TED community.

rare revolution article and selfie for christine gustafson

Such an honor to have the TED Community Organization and co-founder Christine Gustafson featured in Rare Revolution magazine.

Thyroid Eye Disease (TED) Common Symptoms

light sensitive eyes

Light Sensitivity

watery eyes

Watery Eyes

dry gritty eyes

Gritty Eyes

red eyes

Red Eyes

bulging puffy eyes

Bulging Puffy Eyes

double vision

Double Vision

Graphics and fact sheet courtesy of Prevent Blindness.

Want to know more about the TED Community? Listen in to this recent podcast with host, Lauren Freedman.

Learn about the founding the TED Community Organization, the first nonprofit dedicated solely to thyroid eye disease.

  With support from Horizon, Listen to your Eyes, and podcastone.

American Academy of Ophthalmology, 2023 article, Thyroid Eye Disease (TED):

Thyroid eye disease (TED) is an autoimmune disease caused by the activation of orbital fibroblasts by autoantibodies directed against thyroid receptors. TED is a rare disease, which had an incidence rate of approximately 19 in 100,000 people per year in one study. The disorder characterized by enlargement of the extraocular muscles, fatty and connective tissue volume. Graves’ disease (GD) is an autoimmune disorder involving the thyroid gland, typically characterized by the presence of circulating autoantibodies that bind to and stimulate the thyroid hormone receptor (TSHR), resulting in hyperthyroidism and goiter. Organs other than the thyroid can also be affected, leading to the extrathyroidal (outside the thyroid gland itself) manifestations of GD. TED is observed in ~ 50% of patients while Graves’ dermopathy and acropachy are quite rare. TED was previously known as thyroid-associated ophthalmopathy (TAO), Graves orbitopathy (GO) and other variations.

Read the full report about thyroid eye disease here.

Learn more about Thyroid Eye Disease (TED)

Visit our TED Videos page for additional videos.

Portraits of Life with Thyroid Eye Disease

A TED Patient Story

The Graves’ Disease & TED Combo

ted art with colorful painting in abstract for thyroid eye disease
TED ART for thyroid eye disease art classes and therapy through Prevent Blindness.

Thank you for supporting our work on behalf of all those affected by thyroid eye disease!

Amgen formerly Horizon Therapeutics
ACELYRIN is an innovative biopharma company that aims to invest in, develop and commercialize clinically meaningful therapies.
Viridian Therapeutics
Lassen Therapeutics is developing novel, best-in-class biotherapeutics to improve the lives of patients suffering from serious diseases.
Tourmaline Bio
Argenx - Reaching Patients Through Immunology Innovation
Sling Therapeutics’ convenient oral small molecule linsitinib is in a Phase 2b trial for thyroid eye disease (TED).
Prevent Blindness Organization
Global Genes Allies in Rare Disease
The Assistance Fund
Alliance for Patient Access

How to connect with the TED Community Organization:

Visit our website: https://tedcommunity.org

Send us an email: hello@tedcommunity.org

Sign up for our eNewsletter mailing list.

Volunteer to join us in the building of the TED Community Organization.

Support the TED Community Organization with a financial contribution.

TED Community Organization

We Educate
We Support
We Connect
All those affected by Thyroid Eye Disease (TED)

You’ll never walk alone.

ted community foundation - thyroid eye disease non profit