Rare disease day

Author: NF North Central

Published On: 03/17/2017

Gregg and Becky Erickson of NF North Central hosted a table at the 10th International Rare Disease Day at the University of Minnesota’s College of Pharmacy on February 24.

This event is designed to connect Minnesota researchers with Minnesota patient advocacy groups. Attendance was at an all-time high this year, which put the event over capacity.

U of M researches presented at poster sessions and more than 20 patient advocacy groups featured exhibits to support the conference theme, research.

The event was co-sponsored by the U of M College of Pharmacy’s Center for Orphan Drug Research (CODR) and Stem Cell Institute (SCI). CODR exists to improve the care of individuals suffering from rare diseases through research, increased education efforts, and by taking an active role in shaping public policy applicable to rare diseases and orphan drug development. The SCI brings together talent and expertise from across the university to use stem cell biology to advance regenerative medicine therapies for devastating disorders and to provide education and training for the stem cell scientists of tomorrow.

Steve Groft, president elect of the International Conference on Rare Diseases and Orphan Drugs, delivered the keynote address. In his address, Dr. Groft spoke about the vital importance of continued funding for rare disease research and the current science inspiring the development of new orphan drugs. 

The event culminated in a surprise announcement by CODR Director James Cloyd III. The 2017 Translation Grants Program will offer two research awards providing funding for up to $50,000 for one year. These competitive grants will be given to two applicants for projects aimed at developing a new therapeutic, diagnostic, medical device, or treatment approach in a rare disorder. 

When Dr. Cloyd made this announcement, the room erupted in enthusiastic applause, immediately followed by an anxious buzzing of conversation. This palpable excitement and anxiety seemed fueled simultaneously by ambition in the minds of young researchers and hope in the hearts of patient advocates, both of whom shared a room on a Friday afternoon for a common cause.