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LIVING RARE
Perspectives, Insights & Experiences (PIE)
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The Propionic Acidemia Foundation (PAF)
Oct 26, 20224 min read
The Care Notebook: An important tool for individuals, their families, caregivers, and medical team
October 26, 2022 Those with rare and complex disorders and their caregivers hold a crucial role in their care team. They often have to...
Aston Martinez
Aug 19, 20225 min read
The Impact of Healthcare Pricing & Transparency on the Rare Disease Community
Imagine this: you’ve just arrived back home from running errands and decide to check the mail, whereupon you find that you’ve received an ou
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