When I transitioned my career from clinical microbiology to medical writing, my goal was to make more of a difference in patient’s lives than I felt I could working in a hospital lab. At that time, I could never have predicted how my writing would evolve into creating awareness and advocacy for rare diseases, particularly sarcoidosis. In 2014, I was diagnosed with pulmonary sarcoidosis, a rare inflammatory disease that has a highly variable clinical course from mild disease to end-stage organ failure and death.
Although I do not have severe complications, sarcoidosis has changed the way I live and experience my life. The biggest challenge I have had since being diagnosed has been finding knowledgeable providers I can trust with my care and treatment. This journey, which has been frustrating, isolating, and at times, depressing, has been the catalyst and motivator for my passion to improve patient care and research into rare diseases. Medical writers play an important role in disseminating accurate, evidence-based information about rare diseases through a variety of resources including patient education, provider education, community advisory boards, and crowdsourcing. This article is the first part of a two-part series and will focus on defining rare diseases and educating providers.
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