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Rare Disease Clinical Research Scholars Program

by Deb Regier -

The Rare Disease Clinical Research Scholars Program is Launching October 2023 for the 2023-2024 Cohort!

This is a year-long course to learn about important aspects of clinical research in rare disorders. Participants have access to virtual real-time sessions on topics to support their careers in rare disease research.   

Who participates? clinical research coordinators,  fellows in their final year of training, postdoctoral fellows, and early career faculty with clinical research interests.

Topics Included: Small cohort statistics and study design; Working with the FDA in rare disease research; Creating a collaboration with a patient/family group; Creating a successful promotion plan; Grant writing and publishing in rare disease; Advocating for rare disease research; Creating a pathway from an idea to a treatment in rare disease; and Networking with the global rare disease community. 

Program Beginning Fall 2023: Year-long course with Virtual sessions (in real time), In-Person sessions in Washington, DC; Twice monthly web-based sessions

Application Process: Limited travel funding is available, with individuals underrepresented in medicine being encouraged to apply for these funds. Rolling enrollment begins 9/15/2023

What Alumni Say:  "Gaining visibility is the best part about the program", "Life advice in research-it is so different from medical school", "The program fueled my passion to engage more and find collaborations", "After the program, I was able to secure a new position...". (for full details of past outcomes, please see Regier et al:  PMID: 35601643).

Questions??:  Contact Course Manager at or Course Director at if you'd want to apply for the next cohort to open.