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
101
A Rare Collection - A Father's Day Special - Am...
17 min
102
SCN8A Rare Mom - The Inch Stone Project and DEE...
39 min
103
Developing Personalized Therapeutics for Ultra ...
37 min
104
How Being a Mom to Twins with a Rare and Undiag...
43 min
105
Effisode - Are We The Actors
5 min
106
A Rare Collection - Keep Digging
18 min
107
The Tréxō Robot and the Many Benefits of this T...
36 min
108
The Outlet - How Chris Anselmo Used Writing to ...
39 min
109
A Rare Collection - Wishing Well
15 min
110
Effisode - The Ultimate Rare Disease Resource G...
4 min
111
Doctor and Rare Disease Dad Is On A Mission to ...
47 min
112
Helping Undiagnosed Patients Who Experience Sym...
42 min
113
Effisode - There's No Crying In Baseball
4 min
114
Patients and Caregivers Being Compensated to Te...
20 min
115
Take Part Founders and PYROXD-1 Parents - Matt ...
47 min
116
Effisode - Wheelchairs and Walls
4 min
117
A Rare Collection - Exhausted and Energized
12 min
118
Real Rare Mama Shop Talk - Deciding What We Sha...
38 min
119
Love, Hope and Cure SYNGAP
107 min
120
Every Patient Matters - Discovering, Developing...
39 min
121
Effisode - Rare Disease Day Events
4 min
122
A Rare Collection - To the Moon and Back
22 min
123
Honoring a Husbands Legacy by Finishing His Wor...
26 min
124
Effisode - Barbara Is Real
4 min
125
From Cancer Biologist to Rare Disease Mom - Dig...
28 min