{"id":58772,"date":"2016-09-12T19:18:53","date_gmt":"2016-09-12T23:18:53","guid":{"rendered":"https:\/\/rarediseases.org\/penn-state-graduate-rare-disorder-survey\/"},"modified":"2022-12-01T11:58:59","modified_gmt":"2022-12-01T16:58:59","slug":"penn-state-graduate-rare-disorder-survey","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/penn-state-graduate-rare-disorder-survey\/","title":{"rendered":"Penn State Graduate Rare Disorder Survey"},"content":{"rendered":"<p>Written by: Kerri Nelson, graduate student at Penn State University and mother to a child with a rare disease.<\/p>\n<hr \/>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-28742 alignleft\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2016\/09\/Mason-e1473707089218-169x300.jpg\" alt=\"mason\" width=\"169\" height=\"300\" \/>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.\u00a0 There was little to no educational materials and emotional support given to me at the time of diagnosis.\u00a0 I was left alone to navigate the world of the internet for information and support.\u00a0 Fortunately, I quickly found a Facebook support group, where I was able to lean on other family members going through similar situations.\u00a0 This was the moment that I decided a systems change needed to be made in the rare disorder community.<\/p>\n<p>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.\u00a0 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.\u00a0 The purpose of the evidence based project was to develop an informational toolkit that contained resources to improve knowledge and access to NORD\u2019s website and to evaluate its effectiveness in improving access to the organization\u2019s resources.<\/p>\n<p>This is what brings me to the below survey.\u00a0 I am interested in knowing <strong>1.) how you learned about NORD and 2.) details about the population NORD is reaching.<\/strong>\u00a0 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.\u00a0 Please take a moment and complete the survey (link below) to help me make a change for the rare disorder community.<\/p>\n<hr \/>\n<p style=\"text-align: center;\"><strong>Click Here:\u00a0Rare Disorder Survey<\/strong><br \/>\n<strong>hosted by Kerri Nelson<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Please take a moment to help PSU graduate student, Kerri, make a change for the rare disease 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