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
126
Effisode - The List
7 min
127
A Mom's Advocacy For Her Son Who Has Hemophilia...
36 min
128
Social Security Disability Revealed - Why It's ...
52 min
129
Effisode - Chasing Greenlights
4 min
130
Medical Student - Urvi Gupta Joins the Global G...
22 min
131
The Effects of Rare Disease on Relationships an...
42 min
132
Effisode - Gravity
4 min
133
A Rare Collection - Batten Down the Hatches
15 min
134
CRELD1 Dadvocate Paying the Ultimate Price - Se...
49 min
135
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
3 min
136
A Groundbreaking Gene Therapy In Record Time to...
30 min
137
Improving Inclusion Practices in Schools with t...
37 min
138
Effisode - Shake It Off
6 min
139
A Rare Collection - Underestimated
18 min
140
Rare Friends Forever - Hanging Out and Showing ...
39 min
141
Effisode - Inclusion Revolution
2 min
142
Rare Disease Families Have Plenty of Hope - Wha...
38 min
143
Together We Can Cure Single-Gene Disorders Star...
42 min
144
Effisode - Montana or Bust
3 min
145
Rare Disease Siblings, The Glass House Children...
41 min
146
A Rare Collection - Easier Said Than Done
16 min
147
Effisode - The Lunchboxes
2 min
148
When Your Career and Personal Life Collide - VP...
34 min
149
Ensuring that the Patient and Caregiver Voice a...
29 min
150
Effisode - CTNNB1 Awareness Day - Rare Disease ...
3 min