Blog

Rare Disease Day

02/28/2017

Having a rare disease is not merely a physical challenge but a social one. Imagine desperately Googling symptoms that you know are problematic but do not understand. Imagine not knowing if there is a cure for your condition. Several marathons are run for conditions such as cancer, heart disease and Alzheimer’s but marathons for lymphangioma, pterigium colli and rat bite fever are unheard of.

Additionally, funding for rare conditions pales in comparison to their gravity. Jenn Brea, an advocate for rare diseases such as myalgic encephalomyelitis (M.E.) pointed out that in the United States, $2500 annually is spent per AIDS patient and $250 per multiple sclerosis patient but only $5 per M.E. patient like herself.

National Rare Diseases Day is an opportunity to show solidarity with people living with rare conditions. On this day, we imagine the role social media can play in improving rare conditions and the social isolation that patients experience. There is much to explore. In the digital age it is not uncommon to share your illness with your online community. It is possible that this information can help identify people with rare conditions to direct resources toward.

Social media may one day be used to assess the prevalence of rare conditions across place and time. This could yield insights for identifying these conditions and understanding their causes, geographic spread and risk factors. Sickweather recently released a whitepaper on social media as a public health surveillance tool. We continue to explore how to revolutionize public health by leveraging the opportunity at our fingertips - social media.

Learn more about Rare Disease Day here: http://www.rarediseaseday.org

submitted by: Ebele Mogo, DrPH - Public Health Policy Correspondent

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