Collaborate with Us
The Institute for Rare Diseases is committed to fostering meaningful collaborations with rare disease families, clinicians, and researchers to accelerate progress in the fight against these conditions. By engaging families affected by rare diseases, we aim to incorporate their lived experiences into research priorities and treatment development. Our partnerships with clinicians are essential in bridging the gap between cutting-edge research and clinical practice, ensuring that innovations are translated into effective therapies. Additionally, we actively seek collaboration with researchers to share insights, data, and resources, creating a multidisciplinary approach that enhances the discovery and development of novel treatments. Together, we are dedicated to improving patient outcomes and advancing the understanding of rare diseases.
For Rare Disease Patients and Families
The Institute for Rare Diseases and the Boler-Parseghian Center for Rare Diseases are deeply committed to collaborating with rare disease families and patients across multiple areas, including research, advocacy, and education. In research, we value the insights and experiences of patients and families, working closely with them to ensure that their voices shape scientific priorities and that patient-centric needs and approaches drive our investigations. Through advocacy efforts, we empower families and patients to become ambassadors for change, providing them with the tools to raise awareness, influence policy, and champion the needs of the rare disease community. In education, we partner with families to co-create resources and engage Notre Dame students. By working together, we aim to build a comprehensive support network and advance progress for all those affected by rare diseases. Please contact Barb Calhoun for more information.
For Researchers and Clinicians
The Institute for Rare Diseases is dedicated to fostering collaborative partnerships with researchers and clinicians around the world, united by the shared goal of advancing the understanding and treatment of rare diseases. We actively seek out multidisciplinary collaborations, offering a platform for researchers across scientific fields to share data, insights, and cutting-edge technologies. By working with clinicians, we bridge the gap between laboratory discoveries and real-world patient care, ensuring that innovations move efficiently from the research stage to clinical application. We welcome partnerships with institutions globally, recognizing that solving the challenges of rare diseases requires collective expertise, diverse perspectives, and the open exchange of knowledge. Please contact science@nd.edu for more information.
Collaborating Organizations and Institutes
Ara Parseghian Medical Research FoundationBill & Melinda Gates FoundationIndiana Clinical Translational Science Institute (I-CTSI)IUSOM (Riley Children's Hospital)National Institute of HealthNational Neimann-Pick Disease Foundation (NNPDF)Center for Research Computing
Donate
Donations support faculty, fellows and students to carry out basic research to understand the mechanisms of rare diseases and develop new therapies for these diseases, in partnership with patients. We are humbled by your trust and faith in Notre Dame to transform a child's life and are always grateful for your donation.