Sep. 12, 2016
Posted by Lisa Sencen
Written by: Kerri Nelson, graduate student at Penn State University and mother to a child with a rare disease.
As both a mother to a child with a rare disorder and a healthcare professional, I was at loss for words when my son was diagnosed. There was little to no educational materials and emotional support given to me at the time of diagnosis. I was left alone to navigate the world of the internet for information and support. Fortunately, I quickly found a Facebook support group, where I was able to lean on other family members going through similar situations. This was the moment that I decided a systems change needed to be made in the rare disorder community.
When I began my Doctorate of Nursing Practice, I found the National Organization for Rare Disorders and felt that this organization would have been beneficial 2 years prior when my son was diagnosed with a rare disorder. I took that opportunity to design and implement a Rare Disorder Toolkit to be disseminated to patients and families at a specific Academic Medical Center as a pilot study. The purpose of the evidence based project was to develop an informational toolkit that contained resources to improve knowledge and access to NORD’s website and to evaluate its effectiveness in improving access to the organization’s resources.
This is what brings me to the below survey. I am interested in knowing 1.) how you learned about NORD and 2.) details about the population NORD is reaching. This will allow me to understand if the Rare Disorder Toolkit is beneficial to those receiving it, and for those who have not received it, where I should take this in the future. Please take a moment and complete the survey (link below) to help me make a change for the rare disorder community.