In the days before the GFPD was founded, families were just beginning to use the Internet to connect, discovering that other families like theirs were out there. John Harris moderated a website and an email list-serve for families whose children’s symptoms were mostly at the moderate or mild end of the disease spectrum, while Pam Freeth connected parents of children with the most severe presentation of this disease through the Zellweger Baby Support Network.
In 2010, parents Shannon Butalla and Melissa Gamble joined to co-found the Global Foundation for Peroxisomal Disorders, bringing together families impacted by peroxisome disorders, including Peroxisome Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD) and the related single enzyme peroxisomal disorders.
Swiss American pediatrician, Hans Zellweger described the familial disorder among siblings(later named for him in recognition of his discovery)
Various other peroxisomal disorders discovered, including infantile Refsum disease, hyperpipecolic acidemia, neonatal adrenoleukodystrophy, and rhizomelic chondrodysplasia punctata.
Zellweger Baby Support Network was formed.
Revealed that Zellweger syndrome is due to the absence of peroxisomes in hepatocytes and renal tubular epithelial cells.
The first parent support group was hosted online.
The Global Foundation for Peroxisomal Disorders was incorporated on October 5th, 2010.
The first biennial international family and scientific conference hosted by the GFPD held in Omaha, Nebraska.
Recruitment begins for the first ever Longitudinal Natural History Study of Patients With Peroxisome Biogenesis Disorders (PBD).
October 5th established as #PauseForPBD day, the GFPD’s worldwide awareness day.
A postdoctoral fellow is placed at the National Institutes of Health (NIH) to uncover therapies for children with PBD-ZSD.
GFPD awards their first medical research grants to scientists conducting research in the field of peroxisomal disorders.
First ever clinical treatment guidelines are published for the PBD-ZSD population. For the first time in history, physicians and specialists have access to best practices in treating disorders.
First GFPD family support meetups are held in four cities across the U.S.
From 1980 to approximately 2010, research on peroxisomal disorders was stagnant.
Dr. Francis Collins, Director of National Institutes of Health, is Keynote Speaker at the 2017 GFPD Family and Scientific Conference.