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You are free to decide which surveys you want to participate in. The survey data will then be collated and analysed to provide data on a European, International and also national level, as well as according to specific diseases. Finally, you will be sent the results of the survey by email so that you can get insight into what other people in similar situations to you feel and think.
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The results of our studies and surveys are communicated to: Patient organisations, so that they can use them to raise awareness among policy makers in their country European and International-level policy makers and other influential figures so that they are made aware of actions that need to be taken for the rare disease community in Europe and internationally The general public through our website, including health care providers and doctors, to inform them about rare diseases.
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Rare Barometer Voices is an interactive project. After registering in Rare Barometer Voices: You will be sent an email to request your participation in each new survey related to subjects that concern you. Studies On-going studies. By vaania.
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