Rare Disease Day

Rare Disease

About one in 10 people in the United States lives with a rare disease, defined as a condition that impacts fewer than 200,000 people. Rare diseases related to the eye, often those that are disruptive and debilitating, account for a significant number of rare conditions.

Social Media Toolkit

Use the suggested social media posts and images below to raise awareness on social media.

• DYK? About one in 10 people in the US live with a rare disease, and rare diseases related to the eye account for a significant number. Learn more with @visionadvocacy’s toolkit: https://visionhealthadvocacy.org/rare-disease
• Addressing the unmet needs of the rare vision community begins with increasing awareness among patients, caregivers, policy makers and health care providers. Learn more here: https://bit.ly/3BPGOR0
• Diagnosing a rare vision condition can take years. Increasing awareness is an important step to ensuring more timely diagnoses for patients. Learn more here: https://bit.ly/4fMWV0i
• Thyroid eye disease is a rare autoimmune condition which can cause permanent damage to the eye if left untreated. Learn more here: https://bit.ly/3xe0gF8
• Keratoconus is a rare chronic disease affecting approximately one in 2,000 people. Learn more about it here: https://bit.ly/3OzycB9
• Retinitis pigmentosa is a rare vision condition that can eventually result in vision loss. Ensuring patients have access to a timely diagnosis and treatment can slow that progression. Learn more here: https://bit.ly/4gds7qM

Learn About Rare Vision Conditions

Educational Materials