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