Tags » Tay Sachs

Rare Disease Advocacy Groups Receiving FDA Orphan Designations

Rare disease patient families are setting up not-for-profit organizations, leading the way for funding research and accelerating the drug approval process. This Blog Post looks at two rare disease advocacy groups that have received FDA Orphan Drug Designation (ODD) for novel gene therapies: 527 more words

Orphan Drug Development

Rare Disease Day

Today, Feb. 28, is Rare Disease Day. Around the world, “Day by day, hand in hand” people face these rare diseases and hope for cures. 187 more words

Rett Syndrome

Cracking the Code of Life

Cracking the Code of Life is a documentary that focuses on the Human Genome Project and the race to decode the complete set of nucleotide pairs in the entire human genome. 412 more words

AP Biology

Archie's Tay Sachs Timeline


Archie was born in September 2010, healthy and what I naturally perceived at the time, ready for an amazing and full life ahead.

As I held him for the first time, I gazed proudly, through tears, into those eyes of his. 933 more words

Still Waters

It’s funny how empty significance can feel.  The world goes on, while we know our life has changed. On our worst days, it’s easy to believe we’re insignificant. 352 more words


The Genomic Impact on Population Health

A major factor that impacts everyone’s health is their ancestry. Your ethnicity plays an important role in assessing risk for certain diseases. But ethnic background can be difficult to determine. 586 more words

Photos of a short life comfort only some grieving parents


The death of a child is a profound loss, and how parents grieve is often deeply personal. So personal that what comforts one parent may disturb the other. 12 more words