ICTS Community Advisory Board co-chair featured in People Magazine regarding rare disease journey

Image
Image Credit
Doug Lindsay
Organization
Caption
Doug Lindsay

Doug Lindsay describes the battle with his own rare disease. Now, he advocates for others.

With over a decade spent trying to understand the rare disease that kept him bedridden for most of his 20s, Doug Lindsay learned to become his own advocate. For years he dedicated himself to investigating his symptoms and seeking help from a variety of specialists in hopes of finding answers. Eventually, through extensive research and sheer determination, Lindsay discovered a treatment and pioneered a surgical procedure for his condition. Today, Lindsay uses his experience to advise individuals and organizations, including the ICTS, about the rare disease experience and its effects on patients, physicians, our health care system, and the greater research community as a whole.

People Magazine recently profiled his journey in a December 28, 2021 article that includes a comment from ICTS Associate Director Christina Gurnett, MD, PhD regarding the pervasiveness of rare disease. Read the full article here.

Organization
CTSA Program In Action Goals
Goal 1: Train and Cultivate the Translational Science Workforce
Goal 2: Engage Patients and Communities in Every Phase of the Translational Process
Goal 3: Promote the Integration of Special and Underserved Populations in Translational Research Across the Human Lifespan
Goal 4: Innovate Processes to Increase the Quality and Efficiency of Translational Research, Particularly of Multisite Trials
Goal 5: Advance the Use of Cutting-Edge Informatics