Advocacy

The Boler-Parseghian Center for Rare and Neglected Diseases strongly advocates for patients and their families to develop new drugs and treatments for rare and neglected diseases.  Patients can make a big difference to research and its translation into therapy, and CRND is centered on a model that builds partnerships with families who are affected by a disease and want to work with us. 

We also help rare disease patients and their communities organize and transform from single families into leadership networks and help them develop transformative solutions. Over the last decade, our growth has been incredible because it has involved not just scientists, researchers, and their trainees, but also patient communities and the pharmaceutical sector.

CRND has founded and sustains coursework and summer programs that are now integrated into the ND curriculum, where students directly learn from the patients who are highly informed about their diseases. CRND researchers and students partner with patients at our annual Rare Disease Day conference enhancing both the University and patient support.  Patient partners are key stakeholders in all aspects of CRND, including our fight song!