Raising Awareness of Rare Diseases and the Need for More Research

The National Organization for Rare Disorders (NORD) has announced a new, yearlong campaign to raise public awareness of rare diseases. “Do Your Share for Rare” shines a light on people living with a rare disease and provides an opportunity for them to share their story.

“For those living with a rare disease, the awareness, education, and support of others is paramount,” Peter L. Saltonstall, president and CEO of NORD, said in a statement. “‘Do Your Share for Rare’ is an attempt at more widespread awareness, which for someone living with a rare disease, means a great deal.”

The campaign is also aiming to prompt people to get involved in a variety of ways, including advocacy, donation, and research.

The announcement of the new campaign kicked off on February 28, which is Rare Disease Day. This year’s Rare Disease Day has the theme of research, and its slogan is “With research, possibilities are limitless.”

There are approximately 7000 known rare diseases, many of which do not have treatments, and research can help increase the understanding of these diseases and identify previously unknown ones.

“Research is key,” according to the official site of Rare Disease Day. “It brings hope to the millions of people living with a rare disease across the world and their families.”

Rare Disease Day 2017 calls upon researchers, universities, students, companies, policy makers, and clinicians to not only do more research, but also recognize the crucial role that patients play in research.

More than 80 countries and hundreds of cities participate in Rare Disease Day. Themes in past years have included patient voice (2016), living with a rare disease (2015), care (2014), solidarity (2013 and 2012), and rare diseases and health inequalities (2011).