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
These Two Rare Disease Parents Never Met Until ...
60 min
77
Utilizing Child Life Specialists - Empowering R...
32 min
78
A Rare Collection - Five Advocacy Aces Share Th...
39 min
79
Effisode - 2023 SynGAP Cannonball for a Cure
3 min
80
Fundraising Strategies for Patient Advocacy Org...
31 min
81
Navigating Parenthood as a Rare Mom - Expert In...
45 min
82
Effisode - The Unconventional Toothfairy
4 min
83
Advocating with Heart - Striking the Balance Be...
43 min
84
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min
85
Effisode - Summer Camp for Medically Complex Kids
8 min
86
A Rare Collection - Schools Out for the Summer
20 min
87
Anecdotes From a Rare Disease Dad of an Adult S...
35 min
88
A Guide for Rare Disease Patient Advocacy Group...
38 min
89
Claudia Gonzaga Jauregui
49 min
90
From the Rare Disease Bunker to Many More Birth...
24 min
91
A Rare Collection - A Father's Day Special - Am...
17 min
92
SCN8A Rare Mom - The Inch Stone Project and DEE...
39 min
93
Developing Personalized Therapeutics for Ultra ...
37 min
94
How Being a Mom to Twins with a Rare and Undiag...
43 min
95
Effisode - Are We The Actors
5 min
96
A Rare Collection - Keep Digging
18 min
97
The Tréxō Robot and the Many Benefits of this T...
36 min
98
The Outlet - How Chris Anselmo Used Writing to ...
39 min
99
A Rare Collection - Wishing Well
15 min
100
Effisode - The Ultimate Rare Disease Resource G...
4 min