The 29th February is the Rare Disease Day, the rarest day of the year. 2016 will be the ninth edition of this celebration, which each year brings together anyone affected by a rare disease, patients, their families and caregivers, and to raise awareness of rare diseases among policy makers, industry, researchers and health professionals.
Created by EURORDIS, the European Organisation for Rare Diseases, in 2008 in collaboration with National Rare Diseases Alliances, the day has progressively become a world event. EURORDIS, a resident institution at Sant Pau, coordinates the international campaign and provides the communication tools to hundreds of patients organisations around the world. In 2016 we expect more than 80 countries to hold thousands of events around the world, on all continents, reaching millions of people living with a rare disease and their families.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and the challenges that people living with rare diseases face, from delayed diagnostics, to isolation and less availability of treatments, compared with common diseases. The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
Although the prevalence of a rare disease is less than 1 in 2,000 people, they collectively affect over 30 million people in Europe, a 6-8% of the population. Children are particularly affected, around 80 % of rare diseases are inherited and the onset of symptoms occurs at a very early age in approximately 50% of rare diseases. The severity varies from one disease to another, but life expectancy is generally reduced and a patient’s physical and emotional health can be profoundly affected. The fact that there are between 6000 to 8000 different identified rare diseases highlights the complexity and lack of scientific knowledge that surrounds them and that ultimately hampers diagnosis and development of effective treatments.
The digital age has introduced a myriad of opportunities to patients, including the possibility to connect with others living anywhere in the world. Social media networks have become a vital communication channel for patient organisations to reach patients, researchers and other organisations at home or abroad. An overview of activities and events around the world is available at www.rarediseaseday.org and you can also follow us or encourage your contacts to follow us on Facebook and Twitter.