SIOUX FALLS, S.D. (KELO) – Research experts from across the country are in Sioux Falls this week for a rare disease advocacy training.
Dakota Fisher-Vance is at the Sanford Center to connect with others about rare diseases and patient advocacy.
Not only is it part of her job, but it’s also personal as well.
In 2011 she was diagnosed with hereditary cancer syndrome.
“Called familial adenomatous polyposis, which predisposes me to a bunch of different type of cancers and guarantees the development of colon cancer before the age of 39, so at 22 I had to have my colon removed and that surgery actually induced another rare disease, desmoid tumor, so statistically speaking, I’m about four in a million,” senior manager of global patient advocacy at BioCryst Pharmaceuticals, Dakota Fisher-Vance said.
Sanford Health’s research has a focus on rare diseases.
“From the basic science side of things within our laboratories, we have people who are trying to understand the basic, underlying mechanisms within each cell, at a genetic level that contribute to disease,” director of CoRDS registry, clinical research directors, Sanford, Ben Forred said.
A rare disease is defined as a condition that affects less than 200,000 people in the United States.
And this week’s training is a way to help give patients a voice.
“It’s basically a way to train people that are patients or caregivers to work in industry in a patient advocacy function so there’s a patients voice in the room when they are discovering or talking about drug developments,” Forred said.
“Knowing there are so many people in the field trying to bring patient voices into the work they do and how they’re getting creative to really do that and show that’s valuable in their companies, that’s the coolest part of this,” Fisher-Vance said.
Forred says about one in ten people has a rare condition. Sanford Health will also host a Great Plains Rare Disease Summit May 19th through the 21st.