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
These Two Rare Disease Parents Never Met Until ...
60 min
27
Utilizing Child Life Specialists - Empowering R...
32 min
28
A Rare Collection - Five Advocacy Aces Share Th...
39 min
29
Effisode - 2023 SynGAP Cannonball for a Cure
3 min
30
Fundraising Strategies for Patient Advocacy Org...
31 min
31
Navigating Parenthood as a Rare Mom - Expert In...
45 min
32
Effisode - The Unconventional Toothfairy
4 min
33
Advocating with Heart - Striking the Balance Be...
43 min
34
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min
35
Effisode - Summer Camp for Medically Complex Kids
8 min
36
A Rare Collection - Schools Out for the Summer
20 min
37
Anecdotes From a Rare Disease Dad of an Adult S...
35 min
38
A Guide for Rare Disease Patient Advocacy Group...
38 min
39
Claudia Gonzaga Jauregui
49 min
40
From the Rare Disease Bunker to Many More Birth...
24 min
41
A Rare Collection - A Father's Day Special - Am...
17 min
42
SCN8A Rare Mom - The Inch Stone Project and DEE...
39 min
43
Developing Personalized Therapeutics for Ultra ...
37 min
44
How Being a Mom to Twins with a Rare and Undiag...
43 min
45
Effisode - Are We The Actors
5 min
46
A Rare Collection - Keep Digging
18 min
47
The Tréxō Robot and the Many Benefits of this T...
36 min
48
The Outlet - How Chris Anselmo Used Writing to ...
39 min
49
A Rare Collection - Wishing Well
15 min
50
Effisode - The Ultimate Rare Disease Resource G...
4 min