Kerri Nelson, a graduate student in the Department of Nursing at Pennsylvania State University and mother of a child with a rare disorder, is conducting a survey with NORD to learn how patients and families find rare disease information that is helpful to them.
“When I began my Doctorate of Nursing Practice, I found the National Organization for Rare Disorders (NORD) and felt that this organization would have been beneficial two years prior when my son was diagnosed with a rare disorder,” she wrote on the NORD blog. As a result, Ms. Nelson got the idea to help those with newly diagnosed children find the NORD website. She has designed a toolkit to be distributed to patients and families at Penn State’s Milton S. Hershey Medical Center. She also developed a brief survey that is posted on the NORD website.