Posted by Liz Morris on February 17th, 2023
Posted in: Blog, Consumer Health, Health Observances, Public Health
Tags: consumer health, health information, National Health Observances, rare disease
Rare Disease Day is coming up on February 28! According to the NIH, Rare Disease Day “takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives.” They also note that:
Many rare diseases do not have cures, or even consistent treatment protocols. Individuals living with rare disease have information needs that are very difficult to meet. What doctors know how to treat this disease? What research is being done about this disease? Are other members of my family at risk for this disease? Here are some resources to help you and your customers learn more about rare diseases, access relevant information, and help spread the word about Rare Disease Day at NIH 2023!
Collectively, rare diseases are not that rare. As rare disease research, information, and patient advocacy accelerates with advances in genomic medicine, your organization is well positioned to be a partner in progress.