CAHS Rare Care Centre representing Australia on a global stage

The Child and Adolescent Health Service Rare Care Centre is collaborating across the globe to raise awareness and improve healthcare delivery to people living with rare disease (PLWRD) and their families.

The Rare Diseases International (RDI)–Lancet Commission on Rare Diseases is a revolutionary initiative aimed at gaining evidence-based and equity-focused recommendations that can be implemented effectively across all nations to enhance the lives of PLWRD and their families.

The Commission is composed of 27 Commissioners who represent a range of perspectives, including gender and lived experiences, as well as expertise in fields such as ethics, clinical care, research, biostatistics, economics, regulatory affairs, technology, and innovation.

Dr Gareth Baynam, Medical Director of the Rare Care Centre is one of the 27 Commissioners, and together with the Rare Care team, is positioning Australia as a go-to authority in the rare diseases space.

Dr Baynam said the lack of education and services around rare diseases is causing health disparity within PLWRD.

“What we are discovering is that this lack of understanding and education, both in health care systems and in the community, means that there is an inequity in three distinct streams; diagnosis, care, and support,” Dr Baynam said.

“Through being a Commissioner, I, and the Rare Care Centre Team, have been charged with advancing against the unmet needs of PLWRD and their families, generally and with specific leadership for a cross-sector approach to diagnosis and care. We need solutions that traverse all sectors, be it in the health, education, disability, employment or other sectors.

“The RDI–Lancet Commission on Rare Diseases is a critically important piece of work.

“We are excited to be a part of it and look forward to helping to advance the health and well-being of PLWRD and their families around the world.”

The Commission will take a comprehensive approach to examine visibility and make actionable recommendations across five key areas with the following working groups:

• Ethical and moral
• Data and metric
• Societal and health-care system
• Clinical pathway
• Health-care professional competency

The Rare Care Centre is a unique alliance between CAHS and the following philanthropic foundations, whose generosity is helping to change the health landscape of how PLWRD are diagnosed, cared for and supported.

• Angela Wright Bennett Foundation
• McCusker Charitable Foundation (via Telethon Channel 7 Trust)
• Stan Perron Charitable Foundation
• Perth Children’s Hospital Foundation, major sponsor Mineral Resources Limited