Event Summary

The third edition of Rare Disease Day, organised by EURORDIS and its Council of National Alliances, was a resounding success. Throughout the world, a multitude of events took place on and around February 28th to raise awareness of rare diseases and the millions of people affected by them. « Rare Disease Day grows in strength and quality every year, » says Yann Le Cam, EURORDIS CEO. « This year the campaign has taken one step further towards international stature with new partners from as far afield as Japan and Brazil. The campaign has been impressive not only in terms of numbers but also in terms of quality and creativeness »

The 2010 Rare Disease Day attracted a total of 46 countries. Patient organisations in 27 European countries participated, with newcomers from Eastern Europe (Latvia, Lithuania, Slovenia and Georgia, while Russia and Ukraine were involved for the second year). In North America, the US and Canada renewed their support with increased energy and enthusiasm. In Latin America, events were organised in Argentina, Brazil and Colombia. Rare Disease Day was also observed in various parts of Asia, notably China, Japan, the Philippines and India. In 2010, three African countries joined the action as well.

Some National Alliances took the day with a political approach: For example, Rare Disorders Denmark organised Play Decide Games with Parliamentarians; RadiOrg Belgian Alliance presented the state of advancement of the Belgian National Plan for Rare Diseases. The Romanian Alliance worked towards its goal to have the National Plan for Rare Diseases included in the National Strategy for Health by raising awareness amongst decision makers and public authorities; a drive for signatures and a formal petition to the State Duma of the Russian Federation to approve a program for rare diseases.

Several patient groups organised activities to bridge the gap between patients and researchers, and to put the spotlight on research and the need for rare disease research. Examples include a “Raise Your Hand for Rare Disease Research” donation campaign organised by the US Alliance (NORD). The Eva Louise and Horst Köhler foundation for people with rare diseases, in cooperation with the German Alliance (ACHSE), awarded a prize for a research project.

Social Media Highlight

“The website was the most important communication tool of this year’s campaign,” argues Denis Costello, Web Communications Officer, “It is the perfect showcase of the solidarity movement that is growing around Rare Disease Day.” On the website, which received 39,000 hits from 156 countries in 2009 and 2010, people can see what is happening in each country and contact local organisers in order to get involved.