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