Yesterday, we launched the NGLY1.org page on Facebook to facilitate N-glycanase (NGLY1) deficiency family-researcher interaction and provide support.
We invite everyone to join. The page will be a public one, but we reserve the right in the future to make it private if necessary.
In 2012, we launched NGLY1.org as a resource for clinicians, a means of finding new N-glycanase deficiency patients, and a way to support their families.
We will continue to promote N-glycanase deficiency, so patient families will be able to find our community and receive the same support we find so valuable.
We are no longer alone. :)