Rare Disease Day celebrates 7 years of success today
It is now 7 years since the celebrations of Rare Disease Day was started. Rare disease day has been an iconic celebration of our appreciation for rare disease patients and stakeholders for their efforts. Today the celebrations have reached its pinnacle in the 7 years with record number of countries from all over the world participating in the celebrations. Seventy-three countries participated in the 2013 Rare Disease Day event, with more entries this year. Many have contributed to the “show of hands” ritual which stakeholders have contributed to in all these years. This years’ slogan - Join Together For Better Care - urges us to explore how we can assist to gain better care for the patients, be it in obtaining access to medications, or access to expert services or access to social services.
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This year’s official video (above) for Rare Disease Day, which is now available in seven different languages, is superbly presented and inspiring in its message. This video, already popular with more than 17,000 views and more than 200 likes on YouTube, was created in Barcelona by the production company These Glory Days, accompanied by the music of Delorentos, who generously offered the use of their appropriately named song "Care For".
This year Eurordis has also announced a Rare Disease Day ambassador, Sean Hepburn Ferrer, the son of Audrey Hepburn -who struggled with a rare cancer- but whose philanthropic efforts have inspired Sean Hepburn Ferrer as well. He promises to stand with rare disease patients in solidarity in their fight to get better care for patients all around the world. EURORDIS is also organising a Policy Event in Brussels that deals with Improving Access to Rare Disease Care: The Vision of Patients.