News and Events

Congratulations to Siddhee Sahasrabudhe, ECP graduate student and mentee of Dr. Reena Kartha, who was recently accepted into the nationally competitive Rare Disease Clinical Research Network (RDCRN) Rare Disease Scholar Program for the 2020-2021 academic year. The program is designed to support students as they build a career in rare disease research. Congratulations, Siddhee!
Reena Kartha portrait

Dr. Reena Kartha will be teaching a first-of-its-kind Freshman Seminar course on Rare Diseases: What It Takes To Be a Medical Orphan this Fall. The course was accepted into the University of Minnesota’s Grand Challenge Curriculum and will consist of weekly seminars and readings on topics related to the understanding of rare diseases and the economics, regulatory and public policy aspects of development of drugs (orphan products).

Q&A with Dr. Kartha about the course

Lori Endsley was recently accepted into the first cohort of the College of Pharmacy's Leading Change and Project Management Initiative. The eight-week program is designed to teach and hone project management skills. This program is intended to support staff development to take on collegiate level initiatives tied to our strategic plan and likely engage faculty and staff from multiple units/departments. Congratulations Lori!

Dr. Natalie Schmitz, 2018 alumna of ECP's PhD program, and Sarah Kim, current ECP PhD student, were recently accepted into one of NIH's highly coveted Loan Repayment Programs. The program will repay 50% of their student loans over the course of the next two years. Congratulations, Natalie and Sarah!

Within the rare disease community, it is understood that the cost of living with a rare disease, both economically and socially, is immense. Yet, no one has examined the true cost on a large scale in the U.S.

Congratulations to Jim Cloyd for being appointed to the scientific advisory board of Citizens United for Research in Epilepsy (CURE). The CURE scientific advisory board provides insights on the landscape of epilepsy research and strategic guidance on areas that CURE could drive impact for those affected by epilepsy. CURE is the largest funder of epilepsy research outside of the NIH and Department of Defense. Congratulations, Jim!

Register by July 3rd to engage with Rare Across America month. Rare Disease Legislative Advocates (RDLA) staff organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The meetings take place in the Member’s district office during the month of August, while Congress is in recess from August 3rd to September 7th, 2020. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars.

Congratulations to Erica Barnes, CODR Member and Administrator of RDAC, on her recent acceptance into the Executive Master of Healthcare Administration program at the University of Minnesota.

Lori Endsley was recently elected to serve on the Civil Service Senate. Her three-year term will begin on 7/1/2020. Congratulations, Lori!

Congratulations to Parker Johnson for earning a Rho Chi Research Award! This award is for a PD4 who has contributed to and shown promise of excellence in research and pharmaceutical science. Parker joined CODR in 2018 to work with Dr. Kartha on Gaucher Disease. In the ensuing 18 months, he developed a method to isolate small vesicles from blood samples that could potentially be a resource for identifying biomarkers for diagnosis or treatment response. Congratulations Parker!