Making the Case for a Public Health Approach to Rare Diseases
February 29th is Rare Disease Day. In the recently-published article, Public Health and Rare Diseases: Oxymoron No More, CDC researchers discuss using a public health approach to address rare diseases such as fragile X syndrome, spina bifida, and Duchenne muscular dystrophy. These three conditions, part of a group of almost 7,000 rare diseases, are complex conditions which can be life-threatening and physically or mentally disabling. The impact these conditions have on patients and their families, communities, and the healthcare system in general calls for attention from the public health community.
Public health practitioners use many disciplines to address the causes of health threats, and then prevent, weaken, or control those causes across an entire group of people. This approach can be challenging when applied to rare disease research, especially for the prevention of genetic diseases; but other aspects of the public health framework can be used to benefit people with these diseases and their families.
Reducing the impact of symptoms and improving the quality of life for people with rare diseases can be addressed by building an infrastructure for surveillance similar to the one currently in place to address infectious disease outbreaks and other public health challenges.
To learn more about rare diseases and public health, read the new companion blog post published by CDC’s Office of Public Health Genomics.