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
26
The Unique Expertise of a Genetic Counselor - H...
40 min
27
Hospital Survival Kit - Advocating for Your Chi...
23 min
28
Real-World Self-Care for Caregivers - Tiny Wins...
17 min
29
Finding Strength in Friendship - Building In-Pe...
24 min
30
Beginners Guide to Rare Disease - Wisdom from O...
24 min
31
Chasing Glimmers - Electric Love Disability Ret...
32 min
32
Choosing Friends as a Rare Disease Parent - Bui...
16 min
33
Chasing Glimmers - Whats Glimmering with Katie ...
31 min
34
A Mother's Mission - Project Baby Lion, ASO The...
34 min
35
Navigating Physical and Emotional Stress and No...
46 min
36
Where the Glimmers Can Surface
9 min
37
Join Us for The Global Genes Week In Rare
6 min
38
Rare Disease Research - Insights from Charles R...
30 min
39
Rare Connections in NMOSD (Neuromyelitis Optics...
37 min
40
Chasing Glimmers - Illuminating Hope and Lesson...
44 min
41
Are You Worried About Your Baby's Development -...
8 min
42
Understanding Genetic Counseling - Essential In...
27 min
43
The Power of Genetic Diagnosis - More Than Just...
11 min
44
Balancing Rare Disease Advocacy and Family - Na...
36 min
45
Uniting Strengths - Rare Disease Collaboration ...
35 min
46
Episode 228 - Strength In Unity - The Power of ...
51 min
47
Bringing Balance Back to the Language of Disabi...
51 min
48
From Classrooms to Communities - Parents Vision...
45 min
49
The Bravery of the Brokenhearted - A Big Brothe...
46 min
50
The Complicated World of ICD10 Codes with CEO a...
Rare Diseases Need an ICD-10 code
28 min