Rare Disease Awareness
Each year, the rare disease community comes together to raise awareness for the 30 million Americans impacted by rare diseases. The next RDD will fall on Tuesday, February 28, 2023. According to the Genetic and Rare Disease Information Center, a disease is considered “rare” if it affects fewer than 200,000 individuals. The National Library of Medicine states that there are over 7,000 rare diseases that exist, and around 30 million Americans live with rare diseases.
TheMighty.com teamed up with the National Organization for Rare Disorders and surveyed the community about misconceptions of having a rare disorder. Some of the misconceptions included comments about appearance, treatment and diagnosis timeframes. Learn more about rare disease misconceptions here.
Since the zebra is the official symbol of rare diseases in the United States, break out your black and white clothing or use these simple and fun filters on your Instagram or Facebook to share awareness. Open this link using your phone, it will automatically open the filter of your choice in your desired platform. Tag us at the #UtahParentCenter so we can see your awareness and pride!
Additional Resources Here:
- UPC Rare Disorder Resources
- Utah Rare Disease Advisory Council: https://health.utah.gov/rdac/
- Medical Home Portal: Diagnosis and Condition Modules
