Program Context: The Comprehensive Rural Health Project (CRHP) is a local non-governmental organization (NGO) serving over 250 villages around Jamkhed in rural Maharashtra, India. Each village has an average population of 1,000. When CRHP was founded in 1970, health indicators in the area were among the worst in India. The infant mortality rate in 1971, for example, was 176 per 1,000 live births in the Jamkhed area compared with a median nationwide estimate of 140 per 1,000 live births1 and an estimated 19.1 per 1,000 live births in the United States.2 The caste system and low status of women were entrenched in the culture, subjecting women to repression within all aspects of politics, economics, and society.3
Program context: Serving patients with rare diseases presents significant challenges to well-developed health systems. In remote and underserved settings, patients with rare diseases are often neglected altogether. This case study shows how a community health worker approach, using “community advocates,” improves patient care and outcomes in even the most remote and hard-to-reach settings.