Rare Disease Day in Ukraine ?
Associations in Ukraine have participated in Rare Disease Day since 2008, using the occasion to launch publicity campaigns in major cities and hold conferences to progress Ukraine’s National Plan on rare diseases. They also aired a television show based on rare diseases on national television. In 2015, a campaign entitled "Orphan but not rightless" included a photography exhibit in the lobby of the Parliament building in Kyiv, a public demonstration, and a call-to-action letter written by rare disease patients which was given to the Prime Minister.
The Ukrainian Rare Disease Day campaign, which began in 2008 and is organised each year by the Charitable Foundation “Children with SMA” has assumed a new form by becoming a National Alliance – NGO Rare Diseases of Ukraine – since 2014.
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