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- EIN 47-1978341
- (650) 646-4591
- 175 S Main St Ste 500 Salt Lake Cty UT 84111-1927 USA
- www.ngly1.org
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Nonprofit Overview
Causes: Health, Specifically Named Diseases
Mission: The mission of the ngly1 foundation is to eliminate the challenges of n-glycanase deficiency through research, awareness and support.
Programs: In 2017, ngly1. Org increased its patient and family support programs including building out stronger educational materials and online educational opportunities. Ngly1. Org has been strengthening the relationships with researchers and scientists to gain a better understanding of ngly1 deficiency including an innovative partnership between the national center for advancing translational sciences at the nih, retrophin, and ngly1. Org. Ngly1. Org participated in multiple conferences as an exhibitor and participant including the annual clinical genetics meeting, global genes rare patient advocacy summit, and rare disease legislative conference. Ngly1. Org was also the featured speaker at a variety of meetings on topics focusing on the challenges of raising children with rare disorders, precision medicine, benefits of diagnostic testing in rare diseases, and patient and family support.
Donor & Volunteer Advisory
This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.