Caring for a patient with NGLY1 Deficiency can be a complicated and at times overwhelming experience.  Our growing community of NGLY1 families, caregivers, and supporters are here to help guide you through it.

There are many good days and experiences, and most families find that the older the children get the easier it becomes to strike a balance between their medical needs, therapies and just enjoying time together.

If you are a NGLY1 patient or caregiver and would like to connect with other NGLY1 families, please join our support network by clicking here.


Thanks to NGLY1.org and it’s worldwide community, we were finally linked to our forever ‘tribe’.  No more guessing where we fit in the medical world;  we now know what our children have, and we have a carefully woven network of parents, children, siblings, researchers, scientists, and doctors who we learn from and all working towards a treatment and cure.  It takes a village to raise a child…or a tribe.
                           …Jennifer Leftwich, mom to Gage