Language: English
Language: English
Join the National Organization for Rare Disorders (NORD) staff as for a virtual grassroots advocacy workshop recognizing Newborn Screening Awareness Month!
The National Organization for Rare Disorders (NORD®) staff will provide:
Education about recent updates to the newborn screening policy landscape and the NORD's newborn screening policy priorities.
Tools and resources on how to advocate and share your NBS/rare story when meeting with lawmakers and staff.
An overview of NORD’s Living Rare Study®, the first ever large-scale study in the U.S. examining how the experiences and challenges of people impacted by rare disease changes overtime.
