Thyroid Eye Disease (TED) Online Support Groups
Join a supportive and informative online community for individuals dealing with thyroid eye disease. TED Online Support Groups provide a safe space for you to participate in a conversation about what you and others are going through as each navigates the TED journey. These one hour, peer-facilitated, and topic driven online groups use Zoom to connect our global community. You can choose to have your camera off or on. Come as you are. And wear sunglasses if that works best for you. You can simply listen in or share according to your comfort level.
To attend a TED Online Support Group, please fill out the form below to be added to our email list. We will keep you informed about future meet ups.
Because we are a community and not medical professionals, it is important to follow the guidelines of TED Online Support Groups as outlined below – click the plus sign.
The above TED eyes drawing is by Roseanne and is part of the INSIDE OUT TED ART project.
TED Online Peer Support – Join the Conversation
Friday, September 18th @ 2:30pm PT / 3:30pm MT / 4:30pm CT / 5:30pm ET (one hour)
Please join us for a TED Community Peer Support Meet Up – a heartfelt, uplifting, and solution-oriented conversation about living with thyroid eye disease (TED) and Graves’ disease.
Below are the topics for the one-hour meeting that will take place on Zoom. (International participants welcomed!)
You can be on or off camera. This is a safe space so make yourself comfortable!
Scroll down and use the red button to access the ZOOM log in credentials.
Have a topic you want to discuss? Let us know: hello@tedcommunity.org
JOIN THE CONVERSATION!
TED Online Peer Support — Never Worry Alone
Please join us for our monthly TED Community Online Support Group — a welcoming, supportive, and solution-oriented conversation for people living with thyroid eye disease (TED).
Living with TED can bring uncertainty. We may worry about our eyes, our appearance, treatment decisions, what comes next, or whether other people truly understand what we are experiencing.
But worry was never meant to be carried alone.
This month, we’ll talk about what can happen when we bring our concerns into the light — by talking with another person, connecting with others who have lived experience, asking questions, and finding ways to stay engaged with the world around us.
You are welcome to participate, simply listen, and have your camera on or off. Come as you are.
TALKING POINTS
Never Worry Alone
When something is frightening or uncertain, our instinct can be to retreat inward and try to figure everything out ourselves. But sharing a worry with someone we trust can change the experience of carrying it.
We’ll explore:
- Why do we sometimes keep our worries to ourselves?
- Who are the people or places where we feel safe talking honestly?
- How can peer support help when someone else has “been there”?
- What other sources of support can help when TED feels overwhelming?
Sometimes another person cannot solve what we are facing — but they can help us feel less alone while we face it.
A New Treatment Option for TED: Lumvoa
There is something new happening in the TED treatment landscape.
In June 2026, the FDA approved Lumvoa™ (veligrotug-vvze) from Viridian Therapeutics for the treatment of thyroid eye disease. It joins Tepezza® as another FDA-approved biologic treatment option for TED.
Susan will help us open a peer conversation about what the availability of another treatment option may mean for our community.
This will not be a medical-advice session or a discussion about which treatment someone should choose. Instead, it is an opportunity to talk about the questions patients may have, what we are hearing and learning, and how we can prepare for informed conversations with our own healthcare providers.
More options can also mean more questions. Let’s talk about them together.
Finding Connection When TED Feels Isolating
TED can sometimes make our world smaller. Changes in appearance, double vision, discomfort, light sensitivity, fatigue, fear, or simply feeling that other people don’t understand can make it tempting to withdraw.
Chesna will invite us to explore ways of gently moving in the other direction — toward connection.
What helps us remain engaged with other people and with the things that matter to us? It might be joining a TED program, calling a friend, spending time outdoors, volunteering, creating art, participating in an online community, returning to a favorite activity, or simply allowing another person into our experience.
There is no single right way to stay connected.
The important thing may be remembering that TED is something we live with. It does not have to become the whole of our lives.
COME JOIN THE CONVERSATION
Wherever you are in your TED journey — newly diagnosed, many years into the experience, considering treatment, recovering from treatment, or simply trying to figure out what comes next — you are welcome here.
Bring your questions.
Bring your experiences.
Bring your worries, too.
You don’t have to carry them alone.
Wherever you are in your TED and Graves’ journey, you are not alone. We learn from one another — and we heal together.
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Facilitators:
Chesna Duffy Adams
Chesna is an avid nature lover who spends more time than she cares to admit birding. She was diagnosed with thyroid cancer and Graves’ in 2013 and experienced little to no symptoms for over 10 years following a total thyroidectomy. After a Graves’ flare in early 2024, she was diagnosed with TED. Feeling scared and alone, she happened upon the TED Community Organization’s website, where she found understanding, community, and hope. Now, she wants to offer that same sense of support and safety to others living with TED.
Christine Gustafson
Christine Gustafson is the Founder, CEO, and Executive Director of the TED Community Organization, a global nonprofit dedicated to supporting those living with thyroid eye disease (TED). An “accidental leader,” Christine stepped into advocacy by simply trying to help fellow patients navigate the isolating and often overwhelming TED journey. Today, she leads an organization that is uniting patients, physicians, advocacy groups, and industry partners worldwide to foster education, support, and connection.
Susan Roberts, Pharm.D.
Dr. Roberts is a pharmacist living in Maine. She has worked in community pharmacy in Oklahoma and Maine, and worked during the pandemic administering vaccines to nursing homes and long-term care facilities. Diagnosed with TED in 2018, she struggled with symptoms and the search to find high quality disease information. The TED Community has filled that gap. She is delighted to help other patients along their journeys through monthly support groups and/or individual meetings.