Orphan Drug Heroes

World Orphan Drug Congress USA Heroes Wall

Orphan Drug Congress






For 4 years the World Orphan Drug Congress USA has sought inspiration from rare disease patients to continue with the research and discovery for orphan drugs. This year WODC USA asked rare disease patients and advocacy groups who inspires them and selected the 30 heroes of the sector. These heroes photos and why they’re considered heroes will be displayed at the heroes wall in the patient zone in the exhibition area at the conference. One of those heroes is Denise Adams, MD, nominated by Jack Kelly, President of the Lymphangiomatosis & Gorham’s Disease Alliance.

Denise Adams, MD, Professor of Pediatric Medicine at the University of Cincinnati, and Medical Director of the Hemangioma and Vascular Malformation Center at Cincinnati Children’s Hospital Medical Center, is recognized as a world leader in the treatment and management of care of rare lymphatic-system disorders.  Through her dedication and concern for the well-being of children with orphan diseases, Dr. Adams has assembled, and leads, an interdisciplinary team of specialists that care for many of the most complex and serious cases of lymphatic malformations ever diagnosed.  Families bring their children from near and far to seek her help.  Dr. Adams has been the principle investigator of the very first Clinical Trial reported that has included patients with generalized lymphatic anomaly and Gorham-Stout disease.  Dr. Adams is indefatigable in her efforts to find ways to open new avenues of medical treatment, to increase access to highly specialized medical care, and to offer her help to sick children with serious lymphatic malformations anywhere in the world.