Rare Disease Awareness Day 2018: RareDiseaseDay.org
New Jersey Events: Jersey City 3/4 · Trenton 3/5
Rare Disease Day® takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets the general public, and also strives to raise awareness among policy makers, public authorities, industry representatives, researchers, and health professionals.
The USA joined Rare Disease Day in 2009, making the campaign a truly international affair. In 2013, President Barack Obama sent a letter proclaiming his support of the day.
In the U.S., any disease affecting fewer than 200,000 people is considered rare, based on from the Orphan Drug Act of 1983. There are nearly 7,000 rare diseases affecting nearly 30 million Americans — almost one in ten Americans.
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. And when they are correctly diagnosed, 95% find that there is no treatment and ZERO cures.
The main objective of Rare Disease Day is to raise awareness among the general public and decision makers about rare diseases and their impact on patients’ lives.