Category Archives: Uncategorized

The GFPD Supports North Carolina HB 736
May 25, 2021

The GFPD is proud to partner with The EveryLife Foundation for Rare Diseases and several...

The GFPD Supports North Carolina HB 736

https://everylifefoundation.org/voter-voice/?vvsrc=%2fcampaigns%2f80975%2frespond...

11
May
The GFPD advocates for Paid Leave for Family Caregivers Across the Lifespan
April 26, 2021

Over the past year, millions of family caregivers found themselves needing to isolate or take...

The GFPD (along with hundreds of other U.S. nonprofits) advocates for additional 2021 COVID relief, led by the National Council of Nonprofits.
March 2, 2021

At this time of a worldwide pandemic, economic uncertainty, and national turmoil, there can be...

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.
February 12, 2021

On February 12, 2021, the GFPD joined with the TS Alliance and 69 other advocacy...

Gainesville parents raise awareness of rare disorder, PBD, which claimed daughter’s life
October 2, 2020

To remember their daughter and help other families who are in a similar situation, Christopher...

Support local baby Oct. 5 on Pause for the GFPD Awareness Day
September 30, 2020

Archer is one of fewer than 1,000 children living worldwide with PBD-ZSD. ...

Happy First Day of Summer!!

Happy first day of summer! Due to Covid-19, we haven’t been able to do a...

20
Jun
Types of peroxisomal disorders: peroxisomal biogenesis disorders and single enzyme protein deficienc

Most peroxisomal disorders are rare, genetic (autosomal recessive) conditions that are often terminal and affect...

12
Feb
#PauseForPBD: A SLU Doctoral Student Shares His Son’s Journey
October 5, 2018

PBD-ZSD affects approximately one in 50,000 live births and while the exact number of individuals...