The Role of Patient Advocacy in Drug and Device Development for Rare Diseases
While collectively, more than 6,000 rare disorders affect approximately 25 million Americans, the voices of any single disease are dispersed across the country and globe. Engage’s president and CEO Patti Engel designed and fielded the research for this study published by the Association of Clinical Research Professionals (ACRP) to emphasize the importance of patient advocacy in the rare disease space. Read more of ACRP’s journal here: https://acrpnet.org/resources/clinical-researcher/.
The Role of Patient Advocacy in Drug and Device Development for Rare Diseases (Beaverson K., Saltonstall P., Frestedt J., Engel P.; 2010)