Carol Orzel wanted her skeleton to be displayed when she died.

The US woman had one of the rarest bone diseases in the world, fibrodysplasia ossificans progressiva — or FOP.

Key points: Ms Orzel had FOP, where bone forms outside of the skeleton

Ms Orzel had FOP, where bone forms outside of the skeleton The Mutter Museum said they were honoured to make the display "her forever home"

The Mutter Museum said they were honoured to make the display "her forever home" Museum curator Anna Dhody hopes the skeleton will teach people about the condition

Ms Orzel died in February last year from heart and lung problems, a common issue for people with FOP.

The disorder causes muscle tissue and connective tissue, such as tendons and ligaments, to gradually be replaced by bone — forming bone outside the skeleton and therefore limiting movement.

Only about 900 people have been diagnosed with the condition worldwide.

In a recent announcement, the Mutter Museum in Philadelphia said it would be displaying Ms Orzel's 139-centimetre skeleton and fulfilling her dying wish.

Inside the Mutter Museum. ( The Mutter Museum of The college of Physicians of Philadelphia )

In an Instagram post, the museum said it was honoured to make the display "her forever home".

"There are so many facets of Carol that we look forward to sharing with you. She was a huge proponent for medical education.

"Needless to say, she was a force to be reckoned with."

It was only after Ms Orzel first saw the skeleton of Harry Eastlack, who also suffered with FOP, on display in 1995 that she wanted to donate her skeleton.

She told her doctor Frederick Kaplan of the University of Pennsylvania "when my time comes, I would like to hang next to Harry at the Mutter Museum".



The museum has honoured her request and said "Carol Orzel and Harry Eastlack are now side by side in an exhibition exploring the facts of FOP and highlighting the unique stories of these two people".

Mutter Museum curator Anna Dhody spoke to WHYY.org and explained the careful process of transporting the skeleton.

Carol's skeleton will be able to teach people about the effects of FOP. ( Instagram: muttermuseum )

"Carol is fully fused, so her body couldn't be disarticulated first and rendered into a skeleton, and then rearticulated," she said.

"I can't articulate how delicate her bone is. It was almost like taking cotton candy and hairspray."

With 180,000 visitors to the museum each year, Ms Dhody hopes the skeleton will be able to impact the broader community and teach people about the rare disease.

"We want to explain that the more we know about how bone grows where it's not supposed to grow, it can help a wider variety of people than just the 900 people with FOP."