Do you, a family member or friend suffer from a rare affliction? You are not alone. Suffering from a rare disease can feel isolating and alienating, often with more questions than answers. Rare Disease Day, celebrated on February 28th, seeks to unite those suffering from uncommon diseases and provide them with a supportive community to fall back on, led by a team of experts. A disease is considered rare when it impacts less than 200,000 Americans, and around 80 percent of rare diseases are genetic while others are the result of infections (primarily from bacteria and viruses) , allergies and environmental causes . There is a staggering number of rare diseases, currently there are 6000 diseases classified as rare. Because of its prevalence Lyme disease is no longer classified as a rare disease but less common tick-borne diseases such as Rocky Mountain spotted fever, tularemia, babesiosis, ehrlichiosis and others are included on the rare disease list.
The first Rare Disease Day was in 2008 and events were undertaken in 18 countries. The event has grown each subsequent year in 2019 there will be events in 91 countries. Interested in attending one of these events in your country? See the official website at https://www.rarediseaseday.org/events/world to see if there are any events taking place in your area.
In 2019, the Rare Disease Day campaign is hoping to promote increased awareness by using social media (Twitter, Facebook, YouTube ) the suggested hashtags are #RareDiseaseDay and #ShowYourRare.
Perhaps, renowned physician Dr. Brendan Lee provided the best description of the campaign “Rare Disease Day is a way to show these patients and their families that they’re not alone”.