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Jenn Hayes's avatar

This is very well written-thank you. As an RN who has worked as a research coordinator for NIH studies in another rare disease state-patients with Idiopathic Pulmonary Fibrosis you are correct in that the private sector is often not interested in funding trials for rare diseases as the return on investment is not there. The NIH grants are instrumental.

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Sandra Spann's avatar

Thank you for this important information. Can we send letters to register our request? To whom?

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