https://www.youtube.com/watch?v=Wg-Bx8H1-j4& Daniel Lewi (CATS Foundation), Ellen Haf Davies (Aparito), and Femida Gwadry-Sridhar (Pulse Infoframe) discuss their experiences using rare disease... read more →
https://www.youtube.com/watch?v=IMIYYUJmNNM Patient registries are centralised databases that collect medical information about patients with a particular condition or group of conditions.... read more →
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