Once Upon A Gene

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Society & Culture
Kids & Family
Parenting
76
Effisode - The Unconventional Toothfairy
4 min
77
Advocating with Heart - Striking the Balance Be...
43 min
78
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min
79
Effisode - Summer Camp for Medically Complex Kids
8 min
80
A Rare Collection - Schools Out for the Summer
20 min
81
Anecdotes From a Rare Disease Dad of an Adult S...
35 min
82
A Guide for Rare Disease Patient Advocacy Group...
38 min
83
Claudia Gonzaga Jauregui
49 min
84
From the Rare Disease Bunker to Many More Birth...
24 min
85
A Rare Collection - A Father's Day Special - Am...
17 min
86
SCN8A Rare Mom - The Inch Stone Project and DEE...
39 min
87
Developing Personalized Therapeutics for Ultra ...
37 min
88
How Being a Mom to Twins with a Rare and Undiag...
43 min
89
Effisode - Are We The Actors
5 min
90
A Rare Collection - Keep Digging
18 min
91
The Tréxō Robot and the Many Benefits of this T...
36 min
92
The Outlet - How Chris Anselmo Used Writing to ...
39 min
93
A Rare Collection - Wishing Well
15 min
94
Effisode - The Ultimate Rare Disease Resource G...
4 min
95
Doctor and Rare Disease Dad Is On A Mission to ...
47 min
96
Helping Undiagnosed Patients Who Experience Sym...
42 min
97
Effisode - There's No Crying In Baseball
4 min
98
Patients and Caregivers Being Compensated to Te...
20 min
99
Take Part Founders and PYROXD-1 Parents - Matt ...
47 min
100
Effisode - Wheelchairs and Walls
4 min