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Boler-Parseghian Center for Rare and Neglected Diseases

The Boler-Parseghian Center for Rare and Neglected Diseases (CRND) is charged with the mission of supporting research of Notre Dame faculty in early discovery and translational 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. Across 7,000 diseases, the chance of being affected by one is 1 in 10 - hence the aggregate unmet medical need is high. CRND’s goal is to be transformative for outstanding faculty and trainees who drive fundamental laboratory and patient-centric research to deliver novel solutions and heights for the study and treatment of rare and neglected diseases. CRND also supports innovative opportunities for undergraduate education and research as well as patient advocacy to further enhance pre-med education in the Departments of Chemistry & Biochemistry and Biological Sciences in the College of Science and the cross-college Neuroscience and Behavior major, through the Rare Health Exchange (RHE) and promoting collaboration with additional, student-led Patient-advocacy groups at ND. Finally, CRND integrates across mature public-private partnerships, the pharmaceutical industry, foundations, federal agencies, patient service organizations and the academy to move forward ‘collaboratives’ of therapeutic discovery, patient treatment, research, education and advocacy in rare and neglected diseases.

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$1 m Share of Challenge Fund

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Description

CRND’s inaugural event was a two-hour afternoon conference held in Sept 2008. From the outset, CRND has consistently promoted multidisciplinary growth in drug/vaccine development, stimulated IP/external funding/biomedical research, communication and advocacy. 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, two chair positions were filled in rare and neglected diseases. Overall, laboratory research in one, rare neurological disease in 2008 has expanded to ten different rare genetic diseases in 2017-2018, that synergize with Notre Dame’s existing strengths in neglected infectious diseases. CRND faculty collaborate across many disciplines, but the central programmatic focus is molecular biomedicine spotlighted on critical treatment targets and/or processes of drug failure. There are multiple programs of strength in rare genetic disorders as well as neglected infectious diseases. Education and research in patient natural history studies and advocacy have grown from 1 to 15 diseases, starting from embracing five students to now over two hundred (at conservative estimates) and with demonstrated impact on patient communities. The vision is to continue expansion and consolidate growth through (i) faculty hires (ii) funds to promote research in diverse areas of unmet need and develop multidisciplinary teams of excellence and translation and (iii) a nationally, preeminent program of patient-advocacy and -research.

Donations are applied to...

During this exciting time, we have the unique opportunity to earn a portion of a $1 Million! Make a $10 gift on Notre Dame Day (April 23 – 24), and receive 5 votes to cast. The total number of votes we receive decides our percentage of the $1 Million. Please vote for us!

Why are donations necessary?

We encounter many requests for assistance from rare disease families. Your financial contribution will help us to give them a chance. If you believe in research and education that can transform a child's life, now would be a perfect time to give. Our successes cannot be possible without your partnership, commitment and support. We thank you. Every step, even small ones, enables us to envision future possibilities.