Bridging the gap between scientific research of rare diseases and the affected patients and families

In 2015, my father was diagnosed with primary progressive aphasia (PPA), a type of frontotemporal dementia that my family and I knew nothing about. Medical professionals told us that there was no research on the disease, and I believed this until very recently. I took a class in neurobiology, leading me to attempt to document this lack of research and create a call to action for the research and treatment of rare disorders. However, I was met with an overwhelming amount of information regarding PPA that I was not expecting to find. I was frustrated that I was not given this information; moreover, I did not understand why it was all being 'hidden' from me. After discussion with my mother, I realized that my science education allowed me to find and interpret this information, but more importantly, that not everyone has this same privilege. My call to action pivoted into a call for better communication and for open access to biomedical information. Regardless of the existence and quality of literature about rare diseases, most of the information is out of reach of the public.The public often does not have the scientific literacy to understand the complexities of the genre that is required for comprehension. I recognize that not every patient and family may wish to access the information generated by biomedical research. I argue that they have a right to examine these findings because they are the ones that are being the most deeply affected by these disorders. While the translation of information may seem cumbersome , the impact it could have on patients, caregivers, and providers is worth the effort.