Caring for a patient with NGLY1 Deficiency is 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.
- Download NGLY1 Patient Handbook
- Symptoms | Diagnosis | Prognosis
- Patient Care – Medical
- Patient Care – Therapies