"It's not good when diseases are depicted in that way because it makes people feel ashamed to have the disease, and such a rare disease at that," said Smith, a mother of three. "Life is scary enough as it is. We don't need TV to make it even scarier."
But in defense of "House," Dunkle of NORD had only good things to say about the television show.
"'House' has done some excellent features," said Dunkle. "From our perspective, it's all educational, and education is good and knowledge is power."
By and large, Clack said "Grey's Anatomy" receives positive feedback after rare diseases are featured in episodes.
"People are usually pleased that there may be greater awareness of their diseases and the difficulties and triumphs that go along with it," said Clack. "We hope that, in some small way, making these diseases more prominent will increase their exposure and help with funding and research."