1 in 10 people is diagnosed with a rare disorder. That’s more than cancer and AIDS combined.
Peroxisomal disorders are rare, genetic disorders that are usually terminal in childhood.
Peroxisomes are part of the cell, which affects every system in your body. Patients with
peroxisomal disorders typically experience deafness, blindness, global developmental delays, adrenal insufficiency, neurological issues, and feeding issues.
95% of rare diseases have no FDA approved drug treatment
In 2010 we had 48 patients on our family directory. As of 2020, we now have over 600 patients on our family directory.
In 2010 we had 18 countries represented on our patient registry. As of 2020, we now have 40 countries represented on our family directory.
The first family meetups were held in four cities in 2018: Washington D.C., St. Louis, Dayton, and Salt Lake City, with 135 total attendees.
GFPD was the recipient of a $15,000 research grant from Global Genes to help fund our ZSD Focus Group, conducted by Dr. Mousumi Bose, Montclair State University.
In collaboration with Wynn Mattefy Research Foundation and Rhizokids International, the GFPD funded a grant to Dr. Michael Wangler, Baylor College of Medicine, in support of his Metabolomic Signature of Peroxisome Biogenesis Disorders project.
