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 - Chasing Greenlights
4 min
127
Medical Student - Urvi Gupta Joins the Global G...
22 min
128
The Effects of Rare Disease on Relationships an...
42 min
129
Effisode - Gravity
4 min
130
A Rare Collection - Batten Down the Hatches
15 min
131
CRELD1 Dadvocate Paying the Ultimate Price - Se...
49 min
132
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
3 min
133
A Groundbreaking Gene Therapy In Record Time to...
30 min
134
Improving Inclusion Practices in Schools with t...
37 min
135
Effisode - Shake It Off
6 min
136
A Rare Collection - Underestimated
18 min
137
Rare Friends Forever - Hanging Out and Showing ...
39 min
138
Effisode - Inclusion Revolution
2 min
139
Rare Disease Families Have Plenty of Hope - Wha...
38 min
140
Together We Can Cure Single-Gene Disorders Star...
42 min
141
Effisode - Montana or Bust
3 min
142
Rare Disease Siblings, The Glass House Children...
41 min
143
A Rare Collection - Easier Said Than Done
16 min
144
Effisode - The Lunchboxes
2 min
145
When Your Career and Personal Life Collide - VP...
34 min
146
Ensuring that the Patient and Caregiver Voice a...
29 min
147
Effisode - CTNNB1 Awareness Day - Rare Disease ...
3 min
148
Summer Surfing - Get On Top of the IEP Wave - T...
49 min
149
A Rare Collection - I Will Never Forget
16 min
150
Effisode - Back on Track - All Aboard the Inclu...
5 min