Internationally recognised leader in rare neuromuscular disease research, Professor Gina Ravenscroft has been appointed the inaugural Dr Patricia Kailis Chair in Rare Diseases at The University of Western Australia (UWA) as part of the WA Rare Care Comprehensive Centre.
The endowed chair jointly funded by the Harry Perkins Institute of Medical Research, the Stan Perron Charitable Foundation (SPCF) and UWA, aims to improve the lives of families and children impacted by rare diseases.
“I am incredibly grateful to the Kailis family and all supporters of the Kailis fellowship at the Perkins, the Stan Perron Charitable Foundation and UWA for their vision in establishing this position and for their trust in me as the inaugural Dr Patricia Kailis Chair in Rare Diseases,” Gina said.
“It is a huge honour to follow in the footsteps of such a remarkable and pioneering woman, and to continue her work to provide answers to families affected by rare diseases.
“Medical research is very much a team effort and perhaps nowhere is this truer than in rare diseases. I am very appreciative of the dedication of my entire team, past and present, and look forward to leading them and the impacts that we will make for families.”
Dr Patricia Verne Kailis AM OBE
The chair is named after the late Dr Patricia Verne Kailis AM OBE, who was a pioneer of world-first, groundbreaking research on genetic diseases and mapping debilitating diseases such as Duchenne Muscular Dystrophy, providing vital answers and information for WA families planning to have children.
The establishment of the Dr Patricia Kailis Chair in Rare Diseases will honour Dr Kailis’s legacy through an enduring investment in rare disease research, genetics, discovery and translational impact.
The appointment reflects the strength of rare disease expertise in Western Australia and the importance of continuing to build a connected ecosystem around children and families living with rare and undiagnosed disease. The Rare Care Comprehensive Centre welcomes this recognition of leadership in rare disease research and the opportunity it creates to further link discovery, care and family support across the system.
The late Harry Perkins AO and Dr Patricia Kailis AM OBE shared a dream that Western Australia would become a centre of excellence in genetic disease research, providing answers for families around the world affected by rare genetic diseases.
That dream was realised in 2020 when Prof Ravenscroft established the Rare Disease Genetics and Functional Genomics laboratory at the Harry Perkins Institute of Medical Research.
As the Dr Patricia Verne Kailis Fellow in Rare Genetic Disease at the Perkins, Prof Ravenscroft and her team have been supported by donations to the Perkins from Dr Patricia Kailis’s family, friends and supporters.
That early foundation has provided a solid platform at the Perkins upon which Prof Ravenscroft continues the relentless hunt for rare disease genes, in memory of Dr Kailis.
Comments attributed to Prof Peter Leedman AO, CEO, Harry Perkins Institute of Medical Research:
“We are delighted that Gina has been appointed as the inaugural Dr Patricia Kailis Chair in Rare Diseases for the Rare Care Comprehensive Centre.
“Gina is an internationally recognised leader in rare neuromuscular disease research, and for the Perkins her appointment strengthens our commitment to rare disease research, deepening collaboration across the sector, and enhancing our global standing in this field.
“Most importantly, it will help drive real impact for individuals and families living with rare diseases and will enable Gina and her team to continue the relentless hunt for rare disease genes, in memory of Dr Kailis.”
Comments attributed to UWA Deputy Vice-Chancellor (Research) Professor Anna Nowak said the University welcomed the appointment:
“Professor Ravenscroft has made some globally significant discoveries, and her groundbreaking research continues to pave the way for new treatments,”
“Her appointment underlines the University’s commitment to addressing serious health challenges and aligns with our vision to drive innovation, excellence and community impact in medical research.”
Comments attributed to Elizabeth Perron AM, Chair, Stan Perron Charitable Foundation
“The Stan Perron Charitable Foundation is proud to support Professor Gina Ravenscroft’s appointment as the inaugural Dr Patricia Kailis Chair at WA Rare Care Comprehensive Centre. This appointment recognises both her leadership and commitment to improving outcomes for children experiencing rare and undiagnosed disease.”
Comments attributed to Dr Gareth Baynam, Medical Director, Rare Care Comprehensive Centre.
“Professor Ravenscroft’s appointment is a significant recognition of her passion and commitment, of the expansion of rare disease expertise being made in WA, and the opportunity we have to better connect research, care and support around children and families living with rare and undiagnosed disease.”
