Kaitlyn McAlpine is a fearless mountainbiker but her rare condition means she cannot brush her hair. 

The 12-year-old Nelson girl is a keen sportswoman, full of life and a bit of a "nutter", her parents affectionately say.

She is also one of 800 people in the world who suffer from an extremely rare genetic condition, fibrodisplasia osiphicans progressiva (FOP), in which normal tissue turns to bone. 

Kaitlyn's condition has progressed in the past few years. Her arms have locked in place, preventing her from tying her shoes or brushing her hair. Bone regrowth in her neck means she has to turn her whole body to face someone. 

Lisa Foster said the lack of a national framework for rare disorders would make it difficult for families like the McAlpines to access treatment if it became available. 

"We will not be in a position in New Zealand to be able to provide the access because we don't have a mechanism in place to create that pathway to get the drugs through to the family." 

"Our pathway for drug access ends up comparing a drug like that with something like paracetamol." 

"What we would like is a more cohesive, planned, future-focussed angle for people with rare disorders, looking at all the barriers ...  so you're not having to fight at every single angle."

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