TED Community Organization

The 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.

rainbow over harbor - hope

Our TED Survey identified 12 services that those affected by TED would like to see offered through our website. Thus we are currently building these FREE programs into our TED Care Portfolio:

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.

Graves’ Disease Awareness Month

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.


Prevent Blindness Organization
Global Genes Allies in Rare Disease
Horizon Therapeutics
The Assistance Fund
Vision Health Advocacy Coalition
Alliance for Patient Access
Autoimmune Association
Patient Authentic - Rare Disease Patient Advocacy
Viridian Therapeutics
Sling Therapeutics
Sanford Research Rare Disease Registry

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