Care about Rare: Resources for Rare Disease

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

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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:

• An estimated 10,000 rare diseases are affecting about 30 million people in the United States. Most of these people are children.
• In all, nearly 10% of the U.S. population have a rare disease.

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!

• The National Center for Advancing Translational Sciences provides a library of rare disease community resources for patients, caregivers, patient support organizations, health care providers and scientists to help learn about rare diseases and advance related research. This includes free infographics and social media images you can use to raise awareness.
• The Genetic and Rare Diseases Information Center is designed specially for people living with a rare disease and their families. Information is available in both English and Spanish.
• MedlinePlus has a Rare Diseases health topic page. This has everything we know and love about a health topic page: plain language, links to reliable resources, and access to journal articles. Of note is a link to the Genetics section of MedlinePlus, where individuals can learn more about specific genetic diseases, understand genetic testing, and even brush up on the science of DNA.

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.