Promote Awareness
Fund Research
Find Hope
Your support can make a RARE life changing difference.
Promote Awareness
Watch Representative Adam Anderson
Finding Hope
Pilot Program
The Sunshine Genetics Act Establishes Five Year Genetic Sequencing Pilot Program
Mission
Promote Awareness
Fund Research
Find Hope
The A.J. Anderson Foundation’s mission to advance research and cures for rare pediatric diseases including Tay-Sachs and related fatal diseases, to promote awareness and access to genomic medicine and diagnostics, while standing alongside affected families through every stage of their rare journey.
10,000+
Known Rare Diseases
30m+
People in the United States affected by a Rare Disease
80%
of Rare Diseases are genetic
6+ Years
Average time to diagnose a child with a Rare Disease
17
Medical interventions on average to diagnose a child with a Rare Disease
$1T
Economic burden of Rare Diseases in the US in 2019 (Every Life Foundation)
Our Goal
To give every child born with a rare disease the best opportunity for a long healthy life.
– A.J. Anderson Foundation
What is Tay-Sachs Disease
Tay-Sachs disease (TSD) is a rare, fatal genetic disorder, most commonly occurring in children, that results in progressive destruction of the nervous system. Tay-Sachs is caused by the absence of a vital enzyme called hexosaminidase-A (Hex-A). Without Hex-A, a fatty substance, or lipid, called GM2 ganglioside accumulates abnormally in cells, especially in the nerve cells of the brain. This ongoing accumulation causes progressive damage to the cells.
IN THE NEWS
Recent Stories
Rare Disease Day Symposium
Rare Disease Day, recognized globally on the last day of February since 2008, is intended to raise awareness to the approximately 7,000 known rare diseases affecting 300 million people worldwide.
Research efforts
Millions of dollars are needed to diagnose and research cures for pediatric rare diseases, Every dollar raised bring us one step closer to ending rare diseases
