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
GeneDX - A Genetic Diagnosis Matters with Gay G...
45 min
77
A Leap of Faith - Rare Disease Moms on the Bitt...
40 min
78
Turkey Soup for the Soul
6 min
79
Breaking Barriers in Brain Health with Tracy Di...
52 min
80
Policy as a Pathway - Advocating for Rare Disea...
44 min
81
Palliative Care & the Courageous Parent Network...
ONCE UPON A GENE - EPISODE 059
40 min
82
Figuring Out How to Infuse Meaning in the Days ...
42 min
83
Mastering the Art of the Supermarket Answer Whe...
28 min
84
From Heartbreak to Hope - With CEO of Parent Pr...
55 min
85
Effisode - The Irony of it All
4 min
86
These Two Rare Disease Parents Never Met Until ...
60 min
87
Utilizing Child Life Specialists - Empowering R...
32 min
88
A Rare Collection - Five Advocacy Aces Share Th...
39 min
89
Effisode - 2023 SynGAP Cannonball for a Cure
3 min
90
Fundraising Strategies for Patient Advocacy Org...
31 min
91
Navigating Parenthood as a Rare Mom - Expert In...
45 min
92
Effisode - The Unconventional Toothfairy
4 min
93
Advocating with Heart - Striking the Balance Be...
43 min
94
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min
95
Effisode - Summer Camp for Medically Complex Kids
8 min
96
A Rare Collection - Schools Out for the Summer
20 min
97
Anecdotes From a Rare Disease Dad of an Adult S...
35 min
98
A Guide for Rare Disease Patient Advocacy Group...
38 min
99
Claudia Gonzaga Jauregui
49 min
100
From the Rare Disease Bunker to Many More Birth...
24 min