PPA proud to support Kyowa Kirin in their work to fight XLH

On Rare Disease Day 2022, the voice of the XLH community in Australia was heard, with the extent of the physical, emotional and social burden of X linked hypophosphataemia revealed for the first time. XLH is a lifelong condition that impacts the whole body.

PPA was proud to support Kyowa Kirin in their work with partner XLH Australia (XLHA) to conduct important research which provided valuable insights into what it is really like to live with the rare, genetic disease – from painful bone deformities and leg-breaking surgeries to clinical depression and self-harm, alongside feelings of isolation and frustration about the severe lack of disease awareness. For full survey results, visit https://lnkd.in/gm-fVYdF

Healthcare and compassion are things we all deserve. XLHA are hoping for better access to compassionate healthcare and have fingers crossed for a brighter future.

Visit website to learn more about XLH: www.xlhaustralia.com

Congratulations to Naomi Ford and Sandy Bevc for their tireless and unwavering advocacy efforts on behalf of the XLHA community and sincere thanks to the Hon Greg Hunt MP, the Hon Mark Butler MP, Mr Trent Zimmerman MP and Dr Mike Freelander MP, for their bipartisan support of rare disease day, as well as John Alexander MP for his ongoing support through #PFOM.

Related Posts

Press Club with Trade Minister and Special Minister of State, Senator Don Farrell

Great to hear from the inimitable Trade Minister and Special Minister of State, Senator Don Farrell, speaking at the National Press Club of Australia, today about the healthy state of Australia’s trade.

PPA joins Shadow Treasurer at National Press Club

It was great hearing from the Shadow Treasurer of Australia, the hon Angus Taylor MP, last week at the National Press Club of Australia.

Parliament Introduces New Defence Committee

This week, the Defence Amendment (Parliamentary Joint Committee on Defence) Bill 2024 was introduced into the House of Representatives, paving the way for the anticipated establishment of the Joint Statutory Committee on Defence (JCD).