Rare disease day: Growing larger every day.
The International Rare Disease Day celebrated its sixth anniversary this year and like every year, since its beginning on the 29th of February 2008, a rare day in itself, an ever growing number of people from around the globe joined in activities, to be a part of the annual observance aimed to raise awareness for rare diseases. This year more than 70 countries were involved in observing this special occasion making it the largest Rare Disease Day till date. New countries on board this year included Bahrain, Iceland, Israel, Palestine and Singapore. People from several countries created and uploaded remarkably informative and heart-warming videos to spread awareness about rare disease and its toll.
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The social media was ablaze with participation that exceeded expectations. People from all walks of life: caretakers, patient organisations, industries as well as policy makers from all over the world sent in their pictures confirming that they are all in it together to make a difference. Learn more
Rare Disease Day celebrated in Algiers
Policy makers on Rare Disease Day organised by Swiss Alliance of Patients ProRaris
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Show of hands for Rare Disease Day from Australia |
Show of hands for Rare Disease Day from the Committee for Orphan Medicinal Products at European Medicines Agency |
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This year’s slogan “Rare Disorders without Borders” emphasises the need for international collaboration for research, treatment as well as availability of experts in the field of rare diseases, all of which remains dispersed in individual countries. This is in line with the recent global initiative taken by the European Commission and the National Institutes of Health in building and developing the International Rare Diseases Research Consortium (IRDiRC) which has already rallied the support of numerous countries. To foster international collaboration, IRDiRC has announced its first conference in Dublin Ireland on 15-17 April. This conference will bring together stakeholders in rare disease from the international arena to discern what advances can be made together. The highlights of Rare Disease Day included the symposium in Brussels organised between EURORDIS (European Organization for Rare Diseases) and the Members of the European Parliament “to examine how policy measures can help improve access to therapies for rare disease patients” (Further Details)and the setting up of radiz- Rare Disease Initiative Zurich, Clinical Research Priority Program for Rare Diseases University of Zurich- to encourage collaboration between researchers and clinicians (Further Details). This year also marks 30 years of the Orphan Drug Act and the National Organization of Rare Diseases (NORD) in the U.S., who have several activities planned through the year to commemorate this landmark.
Photo courtesy: Rare Disease Day, Eurordis, Flickr