Voices

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You will be sent an email to request your participation in each new survey related to subjects that concern you.

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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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If you have any questions, please contact Sandra Courbier, Rare Barometer leader: rare. Why join us?

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Who can register? How does it work? Register to Rare Barometer Voices. Register now.


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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.

    Read more Read less. Patients, parents, siblings or other family members, patient representatives and carers can register to share their experiences and thoughts.

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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.

    Voices of Science - Voices of Science - The British Library

    By Dianne Mae Naces. By Mehndi Dandwani. By Yasmin Victoria Welsh. What are you doing to protect the planet?

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    Act now. Participate in Our Survey How can we empower young people to address environmental issues?

    Choices Environmental education. Decision-makers listen to young people's views. Including young people in local environmental action. Support for youth to apply their green ideas.

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    All of the above. Vote View results. Read it. Share it. Live it. Club and networks.


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