EURORDIS the organisers of Rare Disease Day share “28 February 2014 is Rare Disease Day. Throughout the world, rare disease patient organisations and their partners will join forces to promote awareness for rare diseases and the millions of people affected by them.
This year, Rare Disease Day puts the spotlight on Care. Caring for people living with a rare disease has many facets. The 2014 slogan “Join Together for Better Care” emphasises that the many different aspects of rare disease care represent a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary.
Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008. Held on the last day of February each year, it seeks to raise awareness for the impact rare diseases have on the lives of patients and those who care for them. A record 72 countries and regions participated in 2013 and over 80 are expected this year.
What began as a European event quickly became international in scope, with participants from more countries joining each year. Rare Disease Day 2014 already has several first-time participant countries and regions on board – including Cuba, Ecuador, Egypt, Jordan, Kazakhstan, Kenya, Oman and Paraguay. Since Rare Disease Day began, thousands of events have been held throughout the world, reaching hundreds of thousands of people.
The European Union considers a disease as rare when it affects fewer than 1 in 2,000 citizens. Over 6000 different rare diseases have been identified to date, affecting over 60 million people in Europe and the USA alone. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering inadequate, and research limited. Despite their great overall number, rare disease patients are the orphans of health systems , often denied diagnosis, treatment and the benefits of research.