Rare Disease Day 2024

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.  

On February 29, join the Vision Health Advocacy Coalition, patient advocates and health care providers in Rare Disease Day to heighten awareness about rare vision diseases. 

Want to get involved? Here’s what you can do.  

  • Participate on Social Media 
  • Learn About Rare Vision Conditions 
  • Explore Partner Resources 

Participate on Social Media

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

  • Today is #RareDiseaseDay. Get involved with @visionadvocacy’s toolkit: https://visionhealthadvocacy.org/rare-disease-day/
  • 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 during #RareDiseaseDay: https://visionhealthadvocacy.org/rare-disease-day/
  • DYK? It typically takes more than five years for patients to receive a rare vision disease diagnosis #RareDiseaseDay: https://visionhealthadvocacy.org/rare-disease-day/
  • Who is at risk of keratoconus? Learn here: https://visionhealthadvocacy.org/rare-disease-day/
  • If left untreated or misdiagnosed, thyroid eye disease may cause permanent damage to the eye. Raise awareness during #RareDiseaseDay. https://visionhealthadvocacy.org/rare-disease-day/

Learn More from Partner Resources

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