The Boler-Parseghian Center for Rare and Neglected Diseases (CRND) is one of the first basic science rare disease research center in the nation. Focused on both basic and translational research, our unique approach places patients and their families at the core of all our efforts. We work with families affected by rare diseases to combine studies of patient data and tissue with fundamental biological research in order to better understand disease, identify molecular targets, and develop new diagnostics and treatments. We have active pharmaceutical partnerships to accelerate the discovery and development of drugs and therapies for rare and neglected diseases.
We are grateful to the Boler and Parseghian families for their generous contributions to support rare and neglected disease research!
We support research and education at Notre Dame emphasizing translation and advocacy work needed to develop therapeutics for rare and neglected diseases.
A rare and neglected disease is defined as one whose incidence is less than 200,000 in the US. Each rare disease affects a small number of patients. But since there are 7000 rare diseases, the chance of being affected by one is 1 in 10. Hence the aggregate unmet medical need is high in the US and worldwide. CRND supports outstanding faculty research and trainees who drive laboratory research to deliver treatments for patients.
CRND also fosters excellence in undergraduate education and patient advocacy. In 2021, the College of Science established a unique undergraduate Minor in Science and Patient Advocacy. The co-Directors are CRND faculty, Barbara Calhoun RN, NP, and Dr. Shaun Lee.
CRND’s inaugural event was a two-hour afternoon conference held in Sept 2008. The Center was ‘endowed’ by Boler-Parseghian families in October 2014. This furthered research support and with the Boler endowment as well as a gift from the Monahan family, multiple junior chair faculty positions were filled in rare and neglected diseases.
Overall, laboratory research in one, rare neurological disease in 2008 has expanded to 12 different rare genetic diseases in 2021, that leverages Notre Dame’s existing strengths in neglected infectious diseases. Our faculty collaborate across many disciplines, but the main focus is molecular biomedicine spotlighted on critical targets and translation to treatments.
Patient natural history studies and advocacy have expanded from one to 20 diseases, growing from five undergraduate student researchers in 2009 to more than 300 today. CRND faculty and students are privileged to partner with multiple patient communities.
We continue to develop internationally preeminent programs of research and patient advocacy.