
882387017
Gilbert, AZ 85298 United States
findingnori.org
Podobné organizace
Decoding Developmental Epilepsies |
|
Eleanor Kaplan Foundation Inc |
|
Lydian Accelerator |
|
Lightning and Love Foundation |
|
Shay Emma Hammer Research Foundation |
Podobné organizace global
EPILEPSYSUSSEX |
|
ARTHUR'S QUEST |
|
DDX3X SUPPORT UK |
|
CURE CLCN4 LTD |
|
CURE INAD UK |
More from Gilbert
GILBERT FINE ARTS BOOSTER CLUB |
|
FREEDOM PREP ACADEMY-MESA |
|
LAUREN'S INSTITUTE FOR EDUCATION |
|
ASHLAND RANCH ELEMENTARY SCHOOL PTSO |
|
INSPIRE MUSIC SERVICE HOPE INC |
More Alliance/Advocacy Organizations
Betic One |
|
JUMP AT LIFE INC |
|
Transplantfirst Academy |
|
Arizona Carcinoid & Neuroendocrine Foundation Inc |
|
Sepsis NOW Foundation |

Poslední diskuze
Nearby
4.5
Gilbert
About the organization
- G01 -
The Finding Nori Foundation Home About Meet the Team Finding Joy Blog Resources Publications DONATE Contact Upcoming Events More Raising research funding for PAX5 and ALG13 related neurological disordersEmpowering families with ultra rare undiagnosed diseases to find answers Our Mission Our mission is to advance scientific research through fundraising and advocacy for ultra rare undiagnosed genetic disorders. Our mission starts with finding a biomarker and precision medicine candidates for ALG13 and PAX5 related neurological disorders Inspired by Our Daughter Nori Our world turned upside down when our daughter Nora Nori was diagnosed with an ultra rare and catastrophic form of epilepsy at just 4 months old. In the months that followed we embarked on a diagnostic odyssey to find the cause of Nora39s epilepsy and global developmental delays. Despite extensive genetic testing with some of the best research institutions in the world the genetic cause of Nora39s disorder is still inconclusive although a few variants of uncertain significance VUS have been identified.
Alliance/Advocacy Organizations