Research experts learn at rare disease advocacy training

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SIOUX FALLS, SD (KELO) – Research experts from across the country are in Sioux Falls this week for rare disease advocacy training.

Dakota Fisher-Vance is at the Sanford Center to connect with others on rare diseases and patient advocacy.

Not only is it part of his job, but it’s also personal.

In 2011, she was diagnosed with hereditary cancer syndrome.

“Called familial adenomatous polyposis, which predisposes me to a bunch of different types of cancers and guaranteed to develop colon cancer before I was 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,” said Dakota Fisher-Vance, global patient advocacy manager at BioCryst Pharmaceuticals.

Sanford Health research focuses on rare diseases.

“On the basic science side of things in our labs, we have people trying to understand the basic underlying mechanisms within every cell, at a genetic level that contribute to disease,” director of the CoRDS registry, directors of the clinical research, Sanford, says Ben Forred.

A rare disease is defined as a condition that affects fewer than 200,000 people in the United States.

And this week’s training is a way to help patients speak up.

“It’s basically a way to train patients or carers to work in industry in a patient advocacy function so that there’s a patient voice in the room when they find out about or talk about drug developments. “, said Forred.

“Knowing that there are so many people in the field trying to bring the voice of patients to the work they do and how they get creative to really do that and show that it’s valuable in their business, it’s is the coolest part of it all,” Fisher-Vance said.

Forred says about one in ten people have a rare disease. Sanford Health will also host a Great Plains Rare Disease Summit May 19-21.


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