Utah EDS Awareness Coalition
Uniting Utah to Raise Awareness, Improve Diagnosis, and Support Those Living with Ehlers-Danlos Syndrome (EDS)
A statewide initiative led by patients, advocates, and community partners to bring visibility to Ehlers-Danlos Syndrome through education, advocacy, and the annual Utah Lights Up for EDS campaign.
What is Ehlers-Danlos Syndrome (EDS)?
EDS refers to a group of genetic connective tissue disorders that affect the body's ability to produce and maintain healthy collagen. This can impact joints, skin, blood vessels, and multiple organ systems—often leading to chronic pain, joint instability, fatigue, and serious medical complications.
Frequently Misdiagnosed
EDS is frequently underdiagnosed or misdiagnosed, with patients often spending years seeking answers.
Thousands in Utah
Thousands of individuals across Utah are believed to be living with EDS or related connective tissue disorders—many without a formal diagnosis.
Our Mission
To elevate awareness of Ehlers-Danlos Syndrome across Utah, improve early recognition and diagnosis, and build a connected, informed, and empowered community of patients, caregivers, healthcare providers, and advocates.
Utah Lights Up for EDS
May Awareness Campaign
Each May, landmarks and buildings across Utah illuminate in orange to honor those living with Ehlers-Danlos Syndrome and raise awareness of a condition that is often invisible.
Sparks Conversation
Sparks public conversation about EDS and invisible illness.
Drives Media Attention
Brings media coverage to a condition often overlooked.
Validates Experiences
Validates the lived experiences of patients and families.
Earlier Diagnosis
Encourages earlier diagnosis and better patient outcomes.
Get Involved
Patients & Caregivers
You are not alone. Connect, share your story, and access resources.
Partners & Organizations
Join us in making Utah a leader in rare disease awareness.
Government & Community Leaders
Support initiatives that improve public health and awareness.
Media & Press Inquiries
The Utah EDS Awareness Coalition is available for interviews, expert commentary, and patient advocacy stories.
Founded by patient advocate and speaker Moka Best, the coalition brings both lived experience and leadership to statewide awareness efforts.
Why This Matters
For many living with EDS, the journey to diagnosis can take years—often marked by medical dismissal, uncertainty, and life-threatening complications.
Awareness is not just about visibility.
It's about validation.
It's about earlier diagnosis.
It's about saving lives.
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Get updates, events, and ways to get involved.