Author Archives: GFPD
GFPD “Sensing Connections” Grief Support Group | Remembrance & Support
Alone. In the darkness, often feeling so incredibly hopeless. This was my reality of my...
Apr
Natalie and Gwendolyn's Rare Disease Week wrap up
February 2020 was Gwendolyn and my first Rare Disease Week. Gwendolyn is my 21 month...
Mar
Spring update from GFPD Patient Ambassador, Anna Violet
Anna Violet says “Happy Spring Time” to all of her PBD family! Anna Violet has...
Mar
Anna Violet’s journey to a peroxisomal disorder diagnosis | GFPD 2020 Patient Ambassador
Our family’s journey to receiving Anna Violet’s diagnosis took approximately three months, but time moves...
Feb
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...
Feb
A diagnostic odyssey | How does a patient receive a diagnosis of a peroxisomal disorder?
A patient with either type of peroxisomal disorder (peroxisomal biogenesis disorder or single enzyme protein...
Feb
Meet 2020 Patient Ambassador, Anna Violet
After following a year in the life of Archer in 2019, this year, we will...
Jan
Reflections on 2019 | Looking ahead to 2020
As 2019 draws to a close, I’m filled with gratitude for our past and present...
Dec
2019 Patient Ambassador – A year with Archer
It is hard to believe 2019 is coming to a close soon. As a new...
Dec
A bereaved mom’s thoughts on grief during the Holidays.
“Christmas is usually one of my favorite holidays. I am one of ‘those’ parents who...
Dec