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