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
Navigating Physical and Emotional Stress and No...
46 min
27
Where the Glimmers Can Surface
9 min
28
Join Us for The Global Genes Week In Rare
6 min
29
Rare Disease Research - Insights from Charles R...
30 min
30
Rare Connections in NMOSD (Neuromyelitis Optics...
37 min
31
Chasing Glimmers - Illuminating Hope and Lesson...
44 min
32
Are You Worried About Your Baby's Development -...
8 min
33
Understanding Genetic Counseling - Essential In...
27 min
34
The Power of Genetic Diagnosis - More Than Just...
11 min
35
Balancing Rare Disease Advocacy and Family - Na...
36 min
36
Uniting Strengths - Rare Disease Collaboration ...
35 min
37
Episode 228 - Strength In Unity - The Power of ...
51 min
38
Bringing Balance Back to the Language of Disabi...
51 min
39
From Classrooms to Communities - Parents Vision...
45 min
40
The Bravery of the Brokenhearted - A Big Brothe...
46 min
41
The Complicated World of ICD10 Codes with CEO a...
Rare Diseases Need an ICD-10 code
28 min
42
Rare Epilepsy Network with Ilene Penn Miller an...
51 min
43
Krabbe Disease with Kasey Feldt
29 min
44
BeginNGS - Newborn Genomic Sequencing to End th...
38 min
45
A Rare Collection - From Financial Strain to Su...
17 min
46
Genomics England Clinical Lead for Genetic Coun...
43 min
47
James G Robinson - More Than We Expected Author...
53 min
48
More of Everything - How I Became a Better Pare...
51 min
49
Uniting Science and Hope - COMBINEDBrain and it...
55 min
50
A Rare Collection - Five Advocacy Aces Share Th...
39 min