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
Doctor and Rare Disease Dad Is On A Mission to ...
47 min
102
Helping Undiagnosed Patients Who Experience Sym...
42 min
103
Effisode - There's No Crying In Baseball
4 min
104
Patients and Caregivers Being Compensated to Te...
20 min
105
Take Part Founders and PYROXD-1 Parents - Matt ...
47 min
106
Effisode - Wheelchairs and Walls
4 min
107
A Rare Collection - Exhausted and Energized
12 min
108
Real Rare Mama Shop Talk - Deciding What We Sha...
38 min
109
Love, Hope and Cure SYNGAP
107 min
110
Every Patient Matters - Discovering, Developing...
39 min
111
Effisode - Rare Disease Day Events
4 min
112
A Rare Collection - To the Moon and Back
22 min
113
Honoring a Husbands Legacy by Finishing His Wor...
26 min
114
Effisode - Barbara Is Real
4 min
115
From Cancer Biologist to Rare Disease Mom - Dig...
28 min
116
Never Give Up - Two Decades of Struggles From D...
53 min
117
Effisode - Seizures Are Stupid
5 min
118
A Rare Collection - New Beginnings
17 min
119
Happiness Is Meant to Be Shared with Author, St...
57 min
120
Effisode - The Friendship Circle
5 min
121
Being Brave, Curious and Motivated to Help Make...
30 min
122
Care Team Prescription - The Importance of Clin...
28 min
123
Effisode - Rare Disease Day 2023
2 min
124
A Focus On Patient Advocacy - Participation In ...
36 min
125
A Rare Collection - Holiday Cheer
18 min