became a member of the National Organization for Rare Disorders (NORD) in March 2016. NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

The membership will provide with access to a network of rare disease advocacy organizations. It will also support our efforts to address policy issues around treating and curing NGLY1 deficiency. One important NORD goal is to help member organizations increase their exposure and visibility to the entire rare disease community and key stakeholders. NORD does this by promoting special events, annual fundraisers, awareness days and patient stories within their social media platforms, e-news and on their website. For more information visit: