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