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
151
A Rare Collection - Easier Said Than Done
16 min
152
Effisode - The Lunchboxes
2 min
153
When Your Career and Personal Life Collide - VP...
34 min
154
Ensuring that the Patient and Caregiver Voice a...
29 min
155
Effisode - CTNNB1 Awareness Day - Rare Disease ...
3 min
156
Summer Surfing - Get On Top of the IEP Wave - T...
49 min
157
A Rare Collection - I Will Never Forget
16 min
158
Effisode - Back on Track - All Aboard the Inclu...
5 min
159
Half of the Day She's a Diversity Champion, the...
35 min
160
A Rare Mama Bear - Being a Single Parent and Ad...
27 min
161
Effisode - Global Genes RARE Disease Patient Ad...
5 min
162
Picking the Brain of a Rare Disease Dad - With ...
27 min
163
A Rare Collection - Remember Who You Are
24 min
164
Effisode - Find Your Fairy Godmother
5 min
165
Episode 138 - When Your Child is Facing the Mos...
36 min
166
Advancing Therapies for Rare Liver Diseases and...
31 min
167
Effisode - Guilt - Ain't Nobody Got Time for That
3 min
168
The Value of Intensive Therapy for Kids with Di...
35 min
169
A Rare Collection - Up At Night
25 min
170
Effisode - RARE Entrepreneur Bootcamp Warriors
4 min
171
The Critical Role of Newborn Screening - Rare M...
37 min
172
Effisode - I Don't Like That
4 min
173
Rare Disease Caregiving Post Childhood with Rar...
40 min
174
Kelley Coleman - Author of You will Feel Better...
34 min
175
Effisode - Gimme a Break, Spring Break
4 min