Author Archives: GFPD
Orientation and Mobility: What is it? How can it benefit a GFPD Warrior? Who provides these services and what should I consider before requesting them?
The GFPD has you covered! Read below to learn all about these important services and...
Oct
Inflation Reduction Act Drug Negotiation Sign On Letter to CMS
The GFPD is one of 101 organizations that recently sent a letter to CMS regarding...
Apr
Brain Awareness Week March 13-19, 2023
Brain Awareness Week is a global campaign during the week of March 13-19, 2023. There...
Mar
Advocacy Resources: Elevate your elevator pitch with David Lapidus
David Lapidus, Board Member for The GFPD, helped train the GFPD Rare Disease Day team...
Mar
GFPD Advocacy Initiatives to Improve the Lives of Individuals with Peroxisomal Disorders
The GFPD is bringing a team of 20 individuals to advocate for rare disease initiatives...
Mar
The GFPD is pleased to support the BENEFIT Act, to elevate the patient voice in the FDA drug development process.
Congress and the Food and Drug Administration (FDA) have made considerable progress in driving forward...
Feb
GFPD Patient Ambassador Jayla Morrison and Mother, Courtney, Advocate in Colorado for Peroxisomal Disorders Awareness
Becoming a teenager is a big milestone for any young American, but Jayla Morrison’s 13th...
Feb
Not All Supplements Are Safe
Having a rare, multi-system disease like a peroxisomal disorder often means taking multiple medications and...
Jan
GFPD joins with 125 other patient advocacy groups urging congress to support critical rare disease priorities
The GFPD is proud to be one of 126 organizations, representing or treating patients impacted...
Nov
GFPD and the Financial Impact of Rare Disease
Earlier this year, the GFPD received a grant from Global Genes to support our conference...
Oct