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
Care Team Prescription - The Importance of Clin...
28 min
77
Effisode - Rare Disease Day 2023
2 min
78
A Focus On Patient Advocacy - Participation In ...
36 min
79
A Rare Collection - Holiday Cheer
18 min
80
Effisode - Presents, Portraits and Beyond the D...
3 min
81
The Clinical Pharmacist - Why They Are A VIP Fo...
38 min
82
How Far We've Come - A Look at the FOXG1 Resear...
44 min
83
Effisode - Fire and Ice
9 min
84
Your Career and Personal Life Collide - Senior ...
38 min
85
A Rare Collection - Beep, Beep, Beep
21 min
86
Effisode - The List
7 min
87
A Mom's Advocacy For Her Son Who Has Hemophilia...
36 min
88
Social Security Disability Revealed - Why It's ...
52 min
89
Effisode - Chasing Greenlights
4 min
90
Medical Student - Urvi Gupta Joins the Global G...
22 min
91
The Effects of Rare Disease on Relationships an...
42 min
92
Effisode - Gravity
4 min
93
A Rare Collection - Batten Down the Hatches
15 min
94
CRELD1 Dadvocate Paying the Ultimate Price - Se...
49 min
95
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
3 min
96
A Groundbreaking Gene Therapy In Record Time to...
30 min
97
Improving Inclusion Practices in Schools with t...
37 min
98
Effisode - Shake It Off
6 min
99
A Rare Collection - Underestimated
18 min
100
Rare Friends Forever - Hanging Out and Showing ...
39 min