February 17, 2022, London, Canada—The Myrovlytis Trust is creating a patient registry for Birt-Hogg-Dubé Syndrome (BHD) to better understand the epidemiology of the disease, its prevalence, and the disease trajectory, to improve the quality of life for this community, and to ultimately develop treatments for BHD. Six hundred families are currently known to carry the gene mutation that causes BHD, but its prevalence is expected to be far greater. To advance their mission the Trust is joining a growing number of rare disease advocacy organizations, leveraging Pulse Infoframe’s registry platform. BHD causes lung cysts, collapsed lung (pneumothoraxes), and benign skin lesions (fibrofolliculomas). About 30% of patients will develop kidney cancer. The kidney cancer is slow growing and rarely metastasizes; however, patients need surgery to remove the tumors once they are greater than 3 cm in diameter. There is no cure for BHD, so patients must have individual symptoms treated as they appear. “We are delighted to be initiating the BHD International Registry (BIRT) in partnership with Pulse Infoframe,” says Dr. Anna Webb, director of The Myrovlytis Trust and BHD Foundation. “This is an opportunity for the BHD community to be actively involved in research to further our understanding of the … Continue reading The Myrovlytis Trust Leverages Pulse Infoframe’s Platform to Study Birt-Hogg-Dubé Syndrome