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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
Olha Urys
Mar 24, 20227 min read
Tragedy and Hope: the Voices of the Living Rare Community in Ukraine 🇺🇦
The morning of February 24th has changed the life of every Ukrainian forever.
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