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The Impact of Research When Your Organization Drives It
24:52
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My Rare Journey
28:44
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My Rare Journey – Feedback
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Is Your Organization Research Ready?
45:00
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Is Your Organization Research Ready – Feedback
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NORD IAMRARE Registry Case Studies
38:14
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NORD IAMRARE Registry Case Studies – Feedback
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Research Standards & Best Practices
38:14
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Research Standards & Best Practices – Feedback
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Research Standards & Best Practices – Summary Video
05:10
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From Diagnosis to Driving Research
40:21
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From Diagnosis to Driving Research – Feedback
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Nothing about Us, without Us: The Community’s Role in Recruitment and Engagement for Research and Registries
36:22
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Nothing About Us, Without Us: The Community’s Role in Recruitment and Engagement for Research and Registries – Feedback
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How to Connect with Scientists and Industry Stakeholders
36:00
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How to Connect with Scientists and Industry Stakeholders – Feedback
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Using Registry Data to Empower your Organization and Engage with Researchers
39:49
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Using Registry Data to Empower your Organization and Engage with Researchers – Feedback
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Using Registry Data to Empower Your Organization – Summary Video
05:38
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Leveraging Social Media to Connect with the Rare Community
37:11
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Leveraging Social Media to Connect with the Rare Community – Feedback
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How to Plan Your Research Through Multi-Stakeholder Engagement and Strategic Planning
42:13
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How to Plan Your Research Through Multi-Stakeholder Engagement and Strategic Planning – Feedback
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The Impact of Research When Your Organization Drives It – Feedback
