Need Links to Vonwilebrands Disease specialists

Hi
My friend is a 25yr old female with Vonwilebrands Disease and needs a specialist who can help her in Kansas City, mo.
She needs certain expensive medications and her insurance company is telling her since she has a pre-existing condition she can't get her medications covered.
She has had this condition since birth. it is a genetic disorder in most cases.
She has not found any physicians skilled in this area.Please help or send links.

Thanks

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