Raising awareness of rare diseases

(ABC 6 News) – Senator Amy Klobuchar is re-introducing bipartisan legislation aimed at delivering life-saving care to patients living with rare diseases.

“As Mayo Clinic especially leads nationally with personal care medicine, and is able to identify rare disease as we see that across the country, that expertise, we are going to unlock the mystery to these rare diseases,” Klobuchar said.

Abbey Hauser is a Minnesota advocate living with a rare disease called Classical Ehlers-Danlos syndrome.

She was diagnosed in 2002 at age of seven. The disease attacks her collagen weakening her body’s bones, tissues and muscles. For example, her body is so fragile she has dislocated her knee while sleeping.

“My body is like a house made out of straw and everyone else is made out of brick, we might look the exact same on the outside, but we do not react the same to external conditions,” Hauser said.

Klobuchar is pushing for federal dollars dedicated to accurate testing and affordable treatment and cures.