Category Archives: Blog
Patient Ambassador Archer – DEXA Bone Scan 2019
Ashley, mom of 2019 Patient Ambassador Archer, shares their family’s experience of taking Archer...
The Siblings’ Perspective – Life with GFPD Patient Ambassador Archer
A few thoughts from Ashley, Archer’s Mom: I have to say I think Archer is...
Apr
MISSION HIGHLIGHT | Equipment Exchange
The GFPD matches families who have medical or therapeutic equipment they are no longer using...
Mar
Melissa’s Rare Disease Conference Wrap Up
During Ginny’s lifetime, I always thought of my role as simply being “Ginny’s mom.” Even...
Mar
GFPD Advocates attend Rare Disease Week in Washington, D.C.
The mission of the GFPD is to improve the quality of life for families...
Feb
Archer’s feeding tube experience
When Archer was born, he had difficulty nursing and gaining weight and was diagnosed with...
Feb
National Disability Employment Awareness Month 2018
One GFPD Family’s Experience with Customized Employment This October, the Global Foundation...
#PauseForPBD: A SLU Doctoral Student Shares His Son’s Journey
PBD-ZSD affects approximately one in 50,000 live births and while the exact number of individuals...
Letter to the Editor: Do an act of kindness to mark Pause for PBD
Peroxisomal Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic, condition affecting...