28 February 2017 marks the 10th International Rare Disease Day coordinated by EURORDIS (European Rare Diseases Organisation). It is observed each year on the last day of February with the main objective to raise awareness on rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
On www.rarediseaseday.org you can find information about the thousands of events happening around the world on the last day of February to build awareness for patients and their families, as well as learn more about rare diseases issue, its main characteristics and figures, common problems and, most importantly, inspiration how to make the difference each day.
ECPC strongly supports this initiative and takes this opportunity to draw attention to rare cancers – being very often neglected and making rare cancer patients even doubly disadvantaged: not only must they fight a severe, often life-threatening disease, which is difficult to diagnose and may lack treatment or effective treatment, but they also face uncertainty, fear, frustration and a sense of isolation and lack of support.