Titlebook: Rare Diseases in the Age of Health 2.0; Rajeev K. Bali,Lodewijk Bos,Simon Ibell Book 2014 Springer-Verlag Berlin Heidelberg 2014 Disease D

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Amanda Lordemann,Krissi Danielsson,Jimmy Cheng-Ho Lin

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Why R&D into Rare Diseases Matterheless been made in rare disease understanding. I will show that translation of rare disease research into orphan drug development represents one of the most important steps towards alleviating the burden for patients suffering from a rare disease. Moreover, developing an orphan drug is certainly fe

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Innovative Funding Models for Rare Diseasese these aspects to advance understanding and progress towards a cure for all 7,000 rare diseases. Because these projects are unique and often do not fit into existing grants, a web page for each patient is created and the funds collected go directly to the research for that patient. This chapter dis

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Vignette: A Giant of a Man: Simon Ibell (MPS II)as a darkness that was lonely and intense. In those moments, I realized I was allowing the fear of my son suffering or dying to potentially stifle his wonderful spirit and that spirit would be the determining factor in his life: his defiance.

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Social Media and Engaging with Health Providersients and clinicians who are geographically dispersed, such as those working in the field of rare and orphan diseases. Different applications of these tools emerge frequently and technological developments will provide increasingly better platforms for patients and clinicians to collaborate and engage to improve health outcomes.

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