A column by state Sen. Jennifer Flanagan
By Leominster Champion | on February 16, 2017
Feb. 28 is Rare Disease Day in the United States and across the globe. In the U.S., a “rare disease” is one that affects fewer than 200,000 Americans at any given time. It is estimated that 50 percent of rare diseases are identified in children. Due to a lack of education and awareness on rare diseases, most go misdiagnosed for long periods of time, leading to continued suffering, worry, panic, and pain. In addition, when a diagnosis for a rare disease is given, there is typically no cure. There is also little push to fund treatment, experimentation, and/or research into the disease within the medical community because of the low number of individuals who are diagnosed.
It is for these reasons that Rare Disease Day is so critical. It sheds light on illnesses that otherwise go unnoticed. Having a dedicated day for spreading awareness on rare diseases allows the public and policymakers an opportunity to become educated on rare diseases, and to learn about the work that needs to be done for those who are afflicted. This is how the implementation of new and appropriate public health policy is created.
Legislators should meet the people who have been diagnosed with a rare disease, and hear their personal stories to learn about the challenges they regularly face. By understanding the issue, proper policy can be created. This is a great example of why advocacy, on any subject, is critical. Rare Disease Day is the perfect advocacy opportunity for legislators to see what work needs to be done to ensure that proper research is completed in the medical field for these diseases. Even though a disease is rare, it does not mean those suffering should be overlooked.
For people who have rare diseases, research is the single most important factor that is standing between suffering or being able to have some quality of life. When Feb. 28 comes around this year, consider learning about some of the rare diseases that are affecting your neighbors. Education, awareness, and advocacy are what brings attention to issues.
I would like to encourage all those reading this to help people struggling with rare diseases by spreading the word and advocating on Feb. 28. For more information and resources, visit www.rarediseaseday.org.