Monthly Archives: February 2021
The GFPD joins with the TS Alliance to Advocate for Prioritization of Individuals with Rare Diseases and their Caregivers to have Immediate access to COVID-19 Vaccines.
On February 12, 2021, the GFPD joined with the TS Alliance and 69 other advocacy...
UNMC researcher heads $3.3 million national study
Dr. Rizzo said several of the diseases are so rare that between 500 and 1,000...
Feb
Letter: Pause for PBD, think of Ethan
Oct. 5 is a special day for our family as we celebrate Pause for PBD,...
Feb
Business Perspective with Melissa Bryce Gamble: Use this checklist to start your nonprofit
Melissa Bryce Gamble is president and co-founder of the Global Foundation for Peroxisomal Disorders, which...
Feb
Pause for PBD
Melissa Bryce Gamble shares the story of her daughter Ginny's battle with a peroxisome biogenesis...
Feb
Jersey County Journal – Letter to Editor for Pause for PBD
The Jersey County Journal featured a letter to the editor, from Vicky Maag, about our...
Feb
A walk for a child with a rare disease in Saint-Quentin
Thomas Thériault, of Saint-Quentin, will celebrate his second birthday on November 24. His community recently...
Feb
This unicorn wheelchair costume is truly magical
She's five-years-old, loves all things pink and glitter, and will be sporting a pretty magical...
Feb
NJ mom to run Philly marathon to bring attention to rare disease
De Jesus says that it was a specialist in Canada who diagnosed Jaxson with Peroxisomal...
Feb
Family makes every moment count with terminal son
Jaxon’s health has had a backslide lately. The hospice nurses hope he will make it...
Feb