Rare Families Assistance Programs

LIVING RARE
Perspectives, Insights & Experiences (PIE)

The Propionic Acidemia Foundation (PAF)

Oct 26, 20224 min

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

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 25, 20227 min

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.