The Propionic Acidemia Foundation (PAF)Oct 26, 20224 minAdults Living RareThe Care Notebook: An important tool for individuals, their families, caregivers, and medical teamOctober 26, 2022 Those with rare and complex disorders and their caregivers hold a crucial role in their care team. They often have to...
Aston MartinezAug 19, 20225 minLiving RareThe Impact of Healthcare Pricing & Transparency on the Rare Disease CommunityImagine 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