“Rare is many, rare is strong, rare is proud. It’s never been more important to celebrate and acknowledge those who are rare in our community” – Steve Waugh AO
Steve Waugh AO for World Rare Disease Day. Credit: Jack Atley
Thursday, 25th February 2021: Steve Waugh AO, proudly supported by Canon Australia, is today calling on Australians to join the battle to raise awareness of rare diseases and give a voice to the hundreds of thousands of children and their families suffering in silence, ahead of World Rare Disease Day, Sunday, 28th February 2021.
Inspired by the courage and character of families affected by rare diseases, Australian cricketing hero, Steve Waugh AO, and his wife Lynette Waugh OAM, established the Steve Waugh Foundation 17 years ago in recognition of the many individuals and families who fall through the cracks through no fault of their own. Built on the philosophy of being “somewhere to turn” for sufferers of the rarest diseases, the Foundation has supported more than 2,000 families with individual grants, in addition to funding research, awareness campaigns and respite camps.
“Rare disease patients have long been orphans of the health system, and while the world continues to battle the global COVID-19 pandemic, more than 300 different rare diseases affecting children in Australia continue to linger,” says Steve Waugh.
He adds: “We’ve all faced challenges over the past year and each have a certain level of apprehension about the unknown impact the novel coronavirus might have on our lives. The reality is much more severe for individuals and families affected by rare diseases, who may struggle to even name the disease they face and get access specific treatment and much needed equipment.
The more awareness there is in Australia, and the more coordinated the efforts in government and the medical sector, the better these families and children will be.”Steve Waugh
In its seventh year as a supporter of the Steve Waugh Foundation, Canon Australia is helping to raise awareness for rare diseases through sponsorship of the foundation, and the donation of new photography equipment that will enable affected families to find enjoyment in capturing moments and memories that last a lifetime.
“Paradoxically, rare diseases are so common in the community that it’s very likely that every Australian is connected to someone with a rare disease in some way. Yet, there is a particular lack of awareness of the impact of rare diseases in Australia,” says Dave Yoshida, Managing Director, Canon Australia. “We are proud to support the Steve Waugh Foundation in its mission to help affected families access accurate, locally relevant information, and to present valuable and creative opportunities for impacted individuals, enabling them to express what matters to them and who they are through the lens of a camera.”
What we can do this Rare Disease Day:
Continuing to play a lead role on Rare Disease Day, the Steve Waugh Foundation is asking Australians to watch and share this inspiring official Rare Disease Day video across their networks, communities and social media channels to give children and families with rare diseases a voice and help elevate them to become a priority on the political, public health and welfare agenda in Australia. The video includes six Rare Stars from six continents, including Australia, who highlight the issues and challenges they face daily.
What is a Rare Disease?
A rare disease is a disease that occurs infrequently in the general population, affecting one in 10,000. Interestingly, rare diseases are so common, that 1 in 20 people will live with a rare disease at some point in their lives. Up to two million Australians suffer from a rare disease – around 400,000 of those being children.
Rare disease patients often face life without a diagnosis, feel isolated, go without treatment, go without research, and therefore, live without reason to hope. Families and carers of children with these conditions experience significant psychological stress due to social isolation, unemployment, diagnostic delays, lack of information and difficulty accessing appropriate health care.
To help alleviate the burden on families, the Steve Waugh Foundation has directly supported over 2000 individuals and families through grants and programs since its inception. Committed to enhancing quality of life through medical support and human experiences, the Steve Waugh Foundation has also hosted 56 Respite Retreats to provide relief and positive memories for 1135 individuals1.
Rare Disease Facts
• 30% of families consulted between 6 and 20 doctors before getting the right diagnosis
• 2/3 of children are admitted to hospital at least once a year
• Each child averages 9 visits to a specialist per year
• Each child averages 24 visits to allied health professionals (such as physio-, speech-, and occupational therapists) per year
• Each child attends their General Practitioner 10 times per year on average
What is needed for people living with Rare Diseases in Australia?
• Equal access to quality healthcare
• Greater coordination of health services
• Greater recognition of the health, economic, and psychosocial challenges they face with an increased research effort nationally and internationally
• New diagnostic procedures and treatments
• Accurate and reliable information and education about rare disease for families and health professionals
To help support the Steve Waugh Foundation and those with rare diseases, please visit stevewaughfoundation.com.au/
1 SNUG retreat reports provided by University of Newcastle Family Action Centre as of December 2020