This Rare Disease Day join hands with the community worldwide to make the patient voice heard
On 29 February patients around the world will celebrate the ninth annual Rare Disease Day. People living with a rare disease and their families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases. It will also be a day of reflection to acknowledge how much more can be achieved if we work collectively.
This is a patient-led campaign which was started in 2008 by patient organisations which included mostly European countries. It has now expanded cumulatively, with over 80 countries and regions participating in Rare Disease Day 2016. This year Uganda and Indonesia are making their debut among others, by holding their own local events.
This year's official video for Rare Disease Day (above) has been received enthusiastically, with more than 13,000 views on youtube! This video, now available in 33 languages, celebrates the special moments in the lives of people living with a rare disease.
This years’ theme ’Patient Voice” recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. This years’ slogan ’Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. stage.
It’s not too late. Participate in the Rare Disease Day events. Make your voice heard. Help amplify the voice of the patients.
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