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