Online event to feature rare disease researcher and Iowa State alumna


Courtesy of the Rare Disease Awareness Club's student organization webpage

The Rare Disease Awareness Club will be celebrating Rare Disease Day this Thursday. 

Zane Charter

On Thursday, the Rare Disease Awareness Club (RDAC) will be hosting its fifth annual Rare Disease Day event at 6 p.m. on Zoom. Speaking at the meeting will be RDAC President Emma Snavely, along with Jill Madden, who earned her bachelor’s degree and doctorate in genetics from Iowa State.

Madden, who also earned her master’s degree in genetic counseling from the University of British Columbia, is project manager and genetic counselor for the Manton Center for Orphan Disease Research at Boston Children’s Hospital.

“Orphan diseases are just another name for rare diseases, because the research hasn’t been adopted,” Snavely said. The Food and Drug Administration (FDA) defines an orphan disease “as a condition that affects fewer than 200,000 people nationwide.”

The FDA says that the term “orphan” came to be used when prescription drug companies were not interested in funding research into rare diseases, as it would be difficult to make a profit by selling treatments for them. However, the 1983 Orphan Drug Act has incentivized companies to produce treatments.

The first Rare Disease Day at Iowa State was held in 2018 by RDAC founder Scarlett Eagle. Previous events have featured guest speakers from the pediatric and genetic fields.

Snavely said that the idea behind Rare Disease Day is “meeting everyone’s needs and reducing barriers to living life at its fullest.” She also said that part of the purpose of Rare Disease Day is advocating for social opportunities, health care, diagnosis and treatment for people with rare diseases.

Thursday’s event will be held on Zoom, and it will be open to the public. A question-and-answer session will follow Madden’s presentation.

“It’s open to everyone—the more the merrier. As many people [as possible] would be amazing,” Snavely said.

Information on how to access the event can be found on RDAC’s student organization page.