North Dakota Lawmakers Try to Help Family Fight Rare Disease

February 13, 2015

North Dakota lawmakers want to help a Grace city family who is struggling with a rare genetic disease.

The Kulsrud brothers suffer from PKAN, a disease that causes the human body to not absorb a certain vitamin which cause neurological issues like speech and mobility problems.

The legislature’s resolution urges President Obama and congress to direct the FDA to allow use of experimental medication – that’s been approved and used in Europe and testing in Canada. It will be introduced on Monday.

There is an experimental drug for the disease but the FDA does not allow family to use it.

Read more at the source.

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