Barbara Calhoun

Biography

My main academic emphasis revolves around offering undergraduate students extensive learning opportunities in the field of rare disease clinical research. By conducting thorough reviews of patient medical records, actively engaging with patient families, and collaborating with clinicians and researchers, students gain profound insights into the experience of being diagnosed with a rare disease. In my role as the Director of the Minor in Science and Patient Advocacy, students not only acquire clinical research expertise but also cultivate essential skills for effective advocacy on behalf of rare disease patients. This minor program creates avenues for students to collaborate with professionals in research, clinical practice, biotechnology companies, and directly with patients, fostering a holistic understanding of and engagement with the complexities of rare diseases.

The foundation of the Patient Advocacy Initiative is rooted in the interdisciplinary Minor in Science and Patient Advocacy (MSPA), capitalizing on the university's expertise in rare disease research. This initiative goes beyond traditional boundaries, presenting unique programming and experiential learning opportunities in rare disease outreach, education, and advocacy.These efforts are directed towards raising awareness and identifying opportunities to assist patients with overcoming the many challenges they face living with a rare disease.

https://patientadvocacy.nd.edu/