ted-community-organization-nonprofit-thyroid-eye-disease-2026

Welcome to the TED Community!

Let’s Celebrate TED AWARENESS WEEK 2025 Together!

TED Community Organization
For all affected by Thyroid Eye Disease & Graves’ Disease

The TED Community Organization is the first and only 501c3 nonprofit dedicated solely to people living with thyroid eye disease (TED). Founded and led by patients, the organization provides trusted information, emotional support, and community connection. Through innovative programs and global collaborations, the TED Community is transforming what it means to live with TED – empowering patients to take an active role in their healing journey.

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 a robust portfolio of services and programs for all who are affected by TED.

TED Community Organization thrives because of the support of medical and scientific professionals, industry that is developing solutions for thyroid eye disease, and partner organizations that guide our steps and elevate our voice as TED patients. In essence, we are an international community of individuals who have the shared living experience of TED.

TED Community Organization Presents: CONNECTED 2025

GET REAL ANSWERS TO YOUR MOST PRESSING QUESTIONS
20+ TED Specialists. Life-changing conversations.
Nov 10–15, 2025
Not your ordinary virtual conference!

Join us on the Journey from TED to NED
We Are Rewriting Our Story. Reclaiming Our Lives.

CONNECTED 2025 is the first global virtual conference created by and for people impacted by Thyroid Eye Disease (TED). Hosted by the TED Community Organization—the only 501(c)(3) nonprofit solely focused on TED—this immersive, weeklong event brings together patients, caregivers, medical experts, advocacy leaders, and industry partners for six days of education, empowerment, and connection.

Taking place each evening of TED AWARENESS WEEK for two one-hour sessions, November 10–15, 2025, CONNECTED 2025 is designed to support patients in finding their way from diagnosis to “NED” (No Evidence of Disease) through science, story, and solidarity.

Let’s do this together!

TED Community Portfolio of Services

Our TED Survey identified 12 services that those affected by thyroid eye disease would like to see offered through our website. Thus we have built the following FREE programs into our TED Care Portfolio.

New to 2025 is the development of an 8-module TED Quality of Life Program, TED ART & Creative Studio, and a Global Virtual TED Patient & Partner Conference to be held during TED AWARENESS WEEK, November 9-15, 2025.

Stay up to date with the TED Community!

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

ORIGINAL RESEARCH article
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.

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.

On my 34th birthday, I got a double autoimmune diagnosis.

Read the full article.

View the Rare Revolution online version.

TED COMMUNITY ORGANIZATION MEMBERSHIPS

Thyroid Eye Disease (TED) Common Symptoms

Light Sensitivity

Watery Eyes

Gritty Eyes

Red Eyes

Bulging Puffy Eyes

Double Vision

Thyroid Eye Disease (TED) Fact Sheet

Graphics and fact sheet courtesy of Prevent Blindness.

Spotlight on Graves’ Disease

What is Graves’ disease? All about ‘The Boys’ star Erin Moriarty’s diagnosis

It’s chronic autoimmune disorder that hijacks your thyroid gland, sending it into overdrive and flooding your body with more hormones than it needs, according to the National Institutes of Health.

Early signs often include heat intolerance, increased appetite, difficulty sleeping, fatigue and nervousness, anxiety or irritability, according to the Mayo Clinic.

About 40% of people with Graves’ disease also have TED. Approximately 90% of people with Thyroid Eye Disease (TED) also have Graves’ disease. While Graves’ disease is the most common cause of TED, it can also occur in individuals with other thyroid conditions or even with normal thyroid function according to the American Thyroid Association.

Read the full NY Post Graves’ Disease article here.

American Academy of Ophthalmology defines 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.

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.

This is what happens when you put an entrepreneur in a nonprofit space!

In the first Leap Together episode, host Zach Gobst talks with Christine Gustafson, founder and CEO of the Thyroid Eye Disease (TED) Community Organization. Christine shares her journey from isolated patient to global advocate, emphasizing the power of community in overcoming fear and isolation.

You can find the live episode here:
https://lpcur.com/LeapTogetherEp1