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? Rare diseases related to the eye account for a significant number of rare conditions. Learn more with @visionadvocacy’s toolkit: https://visionhealthadvocacy.org/rare-disease
  • Retinitis pigmentosa is a group of inherited retinal diseases that involve a breakdown of cells in the eye that detect light, eventually leading to vision loss. Learn more: https://bit.ly/3XrE4QE
  • DYK? It typically takes more than five years for patients to receive a rare vision disease diagnosis: https://bit.ly/43WGyYN
  • Who is at risk of keratoconus? Learn here: https://bit.ly/3LrJMgJ
  • If left untreated or misdiagnosed, thyroid eye disease may cause permanent damage to the eye. Learn more: https://bit.ly/3LCh8t8

Learn More from Partner Resources

Want to learn more about rare vision conditions? Explore these resources from VHAC’s partners.