Outreach Programs

Natural History Studies

Boler-Parseghian Center for Rare and Neglected Diseases provides upper level Notre Dame Students with opportunities for clinical research through Rare Disease Natural History studies.  Through courses Bios 40450 and 60565, taught by Dr. Kasturi Haldar and Barbara Calhoun, students receive didactic training to become experts in the clinical aspects of certain rare diseases, their molecular and genetic basis and their metabolic manifestations.  Using this training, students assess rare disease patient medical records to develop the natural history of the disease.  Natural History studies help clinicians and patient families to better understand the progression of the disease and assists researchers with testing of emerging therapeutics. 

Clinical Summaries

Students assess Rare Disease Patient medical records to identify pertinent symptoms of the disease.  Records are summarized into concise 2-3 page Clinical Summaries that are used by patient families for future physician visits.  It provides a detailed history that includes past office visits, hospitalizations, tests, procedures and treatments. 

Patient Interaction/outreach

BP CRND provides opportunities for students and patient families to interact with health care providers, researchers and other rare disease families through events and seminars held on campus.  Patient families are assisted in locating patient service organizations, centers of excellence, resources and services for their rare disease.  Students interact with patient families and work to raise awareness about rare diseases in our community.