Rare and neglected diseases: the Boler-Parseghian Center, 2009

2009 — today

The diseases the market skips: In 2009 Notre Dame established its Center for Rare and Neglected Diseases — the illnesses, thousands of them, each too rare to draw commercial drug development — and brought Kasturi Haldar from Northwestern to be its founding director, the inaugural appointment enabled by a 2009 gift from the Parsons Quinn family. In October 2014 gifts totaling $10 million from the Boler and Parseghian families endowed the center and gave it its standing name, the Boler-Parseghian Center for Rare and Neglected Diseases; the university's rare-disease institute page dates "the establishment of the Boler-Parseghian Center" to 2014, the naming year, against the center's 2009 founding, and both stand as their sources give them. The Parseghian name carries the center's founding grief: Michael and Cindy Parseghian founded the Ara Parseghian Medical Research Foundation in 1994 after three of their four children were diagnosed with Niemann-Pick disease type C, the childhood disorder the foundation — and from 2016 the Ara Parseghian Medical Research Fund at Notre Dame — exists to cure.

The center's work joins laboratory research on rare genetic and neglected infectious diseases with patient advocacy, and its founding director is an inventor on four medical patents assigned to the university, including a test method for detecting Niemann-Pick type C, in the press account of 2025. Haldar's directorship ran from 2009 to 2022, on her university biography. The center's present state must be printed as the public record states it, at its documented size: reporting in July 2025 described the center as three years without a full-time director, Haldar's laboratory shut down the previous December, and her federal suit against the university — alleging discrimination and breach of contract, allegations printed as allegations, the suit then ongoing with no trial date set. In the fall of 2025 the university established an Institute for Rare Diseases as the frame succeeding the center's first era. The research record above is what this section certifies; the dispute belongs to the record as a documented fact of the center's course, and no further.

Sources:

1. University of Notre Dame news (4 September 2009) — the Center for Rare and Neglected Diseases established, Kasturi Haldar its founding director, joined from Northwestern in 2008.
2. University of Notre Dame, College of Science news (13 October 2014) — the Boler and Parseghian families' $10 million endowment and the naming of the Boler-Parseghian Center, "Established in 2009"; the Parseghian foundation's 1994 founding and its children's diagnoses; Institute for Rare Diseases, University of Notre Dame, about page — the 2009 Parsons Quinn gift and inaugural director, "the establishment of the Boler-Parseghian Center in 2014," the Ara Parseghian Medical Research Fund established at Notre Dame in 2016, and the Institute for Rare Diseases established in fall 2025.
3. American Society for Microbiology, biography of Kasturi Haldar — founding director of the Boler-Parseghian Center, 2008–2022 in the biography's dating (her Notre Dame biography gives the directorship as 2009–2022); her founding deputy editorship of PLOS Pathogens.
4. National Catholic Reporter (28 July 2025) — the center three years without a full-time director, Haldar's laboratory shut down the previous December, her federal suit filed the previous October and ongoing with no trial date set, and her four medical patents assigned to Notre Dame including the NPC test; the allegations carried as the suit's allegations.