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Thyroid Eye Disease and Vision Advocacy Organizations
Taking on Thyroid Eye Disease, together
If you have Thyroid Eye Disease (TED) and/or a thyroid condition, like Graves’ disease, you aren’t alone. Hearing how others cope with these conditions can help you learn to better manage them, or just help you feel better. Here are some organizations and communities dedicated to helping those with TED, thyroid conditions, Graves’ disease, and vision issues connect with each other and get support.
Click the circles below to find support groups that may be helpful for you:
Thyroid Eye Disease support resources
Listen To Your Eyes Facebook Community (created and managed by Amgen Inc.)
The Listen to Your Eyes Facebook page is a community resource for people living with or caring for someone with TED. This page offers resources, tips, support, and more. You’re not alone living with TED. Listen to Your Eyes is a place where you can come to learn about TED and be inspired by others who are navigating their own TED journeys as patients and caregivers.
Center for Chronic Illness (CCI)
Monthly web-based peer support group for those living with TED and for loved ones, professionally facilitated by a social worker.
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). A community of individuals who have a shared living experience with TED. TED CO is the only USA-based non-profit to solely focus on Thyroid Eye Disease.
National Organization for Rare Disorders (NORD)
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.
Patients Rising
Formed in 2015, Patients Rising has developed a significant following of over 110,000 patients and caregivers and has guided more than 25,000 of them on their journeys to advocate for themselves and their loved ones to get the care and treatments they need to live a fulfilling life.
Southeastern Guide Dogs
The only organization in North America to provide guide and service dogs, online and in-person training, lifetime alumni support, premium dog food, and preventative veterinary care—all at no cost. Because love, hope, and independence should be given freely.
Thyroid conditions support resources
Graves’ Disease & Thyroid Foundation
Established in 1990 as the National Graves’ Disease Foundation, the Graves’ Disease & Thyroid Foundation provides education and support for patients, family members, caregivers, friends, and healthcare professionals.
The Autoimmune Association
For more than 25 years, The Autoimmune Association has been helping those affected by autoimmune diseases. The Autoimmune Association helps patients and caregivers with resources in education, women-focused information, diagnosis tips, coping tools, and support groups.
Thyroid Federation International
Thyroid Federation International is a global network of patient-focused thyroid disorder organizations. The goal of the federation is to improve the lives of those affected by thyroid disorders around the world.
Graves’ disease support resources
Graves’ Disease & Thyroid Foundation
Established in 1990 as the National Graves’ Disease Foundation, the Graves’ Disease & Thyroid Foundation provides education and support for patients, family members, caregivers, friends, and healthcare professionals.
The Autoimmune Association
For more than 25 years, The Autoimmune Association has been helping those affected by autoimmune diseases. The Autoimmune Association helps patients and caregivers with resources in education, women-focused information, diagnosis tips, coping tools, and support groups.
Vision support resources
Prevent Blindness®
Founded in 1908, Prevent Blindness® has become the nation’s leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight. Focused on promoting a continuum of vision care, Prevent Blindness offers resources to those affected by vision issues.They also host "TED Art Therapy" classes that enroll new cohorts throughout the year.
American Foundation® for the Blind (AFB)
With nearly 100 years of service, AFB is a public policy and research center for the advancement of accessibility and disability-inclusion causes. The AFB advocates for better policies that promote equality and opportunity for people who are blind or visually impaired to create a culture of inclusion at work, at school, and in communities.
National Federation of the Blind (NFB)
NFB is the oldest and largest nationwide organization for Americans living with blindness. The NFB coordinates many programs, services, and resources to provide information and support to children and adults living with blindness. They also have a comprehensive network of programs and services for the visually impaired community.
VisionAware™
VisionAware™ helps adults who are losing their sight continue to live full and independent lives by providing timely information, step-by-step daily living techniques, a directory of national and local services, and a supportive online community.
Lighthouse Guild
Lighthouse Guild is dedicated to addressing and preventing vision loss. The Lighthouse Guild helps coordinate care for eye health, vision rehabilitation, behavioral health, and related services to reduce the burden of living with vision loss.
The National Alliance for Eye and Vision Research (NAEVR)
NAEVR is an advocacy organization consisting of a coalition of 55 professional, patient, consumer and industry organizations involved in eye and vision research. The goal of NAEVR is to achieve the best eye and vision care for all Americans through advocacy and public education for eye and vision research.