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News & Trends - Pharmaceuticals

XLH Australia and Kyowa Kirin give voice to rare disease patients

Health Industry Hub | February 28, 2022 |

Pharma News: New research revealing the extent of the physical, emotional and social burden of X-linked hypophosphataemia (XLH) on Australian patients has been released to mark Rare Disease Day on 28 February.

The first-ever Australia-based research from XLH Australia in collaboration with Kyowa Kirin Australia aims to increase understanding of what it is like to live with the rare genetic disease1 which affects an estimated 1 in 20,000 people.

The nationwide survey of Australians impacted by XLH found that more than half (54%) consider the emotional impacts equally burdensome as the physical impacts of the disabling condition.

“XLH is far more than bowed legs and short stature, it is a disease that strikes at the physical, social and mental wellbeing of those affected,” Naomi Ford, XLH Australia Vice-President said.

Mrs Ford, who lives with XLH as do her two teenaged sons, says, “while it’s easy to focus on bone deformities in children, this research highlights that XLH is progressive, life-long and pervades almost every aspect of an individual’s life.”

The survey reveals life-long physical distress associated with XLH. Among those with the disease.

A lack of community awareness of XLH was cited as a concern, with 83% of respondents agreeing that this impacts the support services and funding available to them.

“This research forms part of our #FingersX for XLH campaign, where our community will share their hopes and expectations for the future,” Mrs Ford said.

“The vast majority of Australians have never heard of XLH, have no idea what it is, and will not meet anyone living with this rare disease,” Mrs Ford said.

“It can be incredibly isolating and not surprisingly, almost three-quarters of the XLH community find it difficult to live with the condition. It’s critical that the realities of XLH for both children and adults are understood, and that our small community has its voice heard loud and clear,” she said.

Mr Simon Dawson, General Manager of Kyowa Kirin Australia, said that the company was proud to collaborate with XLH Australia on this important research.

“We hope the results of this research serve to improve understanding of the enormous and far-reaching impact of this rare disease on those within the XLH community,” Mr Dawson said.


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