Misdiagnoses of Patients with Rare and Complex Disorders - addition |
Misdiagnoses in Patients with Rare and Complex Disorders - addition
Over the past decade, increasing anecdotal evidence in the rare disease community suggests that patients with rare diseases experience disproportionately high levels of misdiagnosis of non-organic illnesses such as Munchausen’s Syndrome By Proxy, Conversion Disorder, and Somatoform Disorder, and that these misdiagnoses interfere with the ability of rare disease patients to access appropriate medical care.
It is important to address this rising problem in the rare disease community. In order to move forward with in-depth studies, the first step is to establish the problem as more than anecdotal.
RNE would like to hear from patients, parents, and caretakers, telling us of their concerns and experiences regarding misdiagnosis of a psychological problem while searching for a diagnosis for symptoms.
RNE will use this information within an RNE initiative to look for solutions to improve the diagnostic process. All survey entries are anonymous.
Due to overwhelming response to the first survey distributed, we want to offer others the opportunity to share their experiences through this duplicate survey.
Thank You!
Thank You!