Today (February 29, 2016) marks World Rare Disease Day – a public health awareness day designed to shed light on the daily lives of patients, families and their carers living with a rare disease through patient organisations, medical professionals, researchers, politicians and industry, by demonstrating solidarity against rare diseases.
This year’s theme for World Rare Disease Day 2016 is ‘Patient Voice’, which recognises the crucial role patients play in voicing their needs and calling for policy changes to help improve their personal lives and the lives of those who care for them.
This year’s World Rare Disease Day slogan, “Join us in making the voice of rare diseases heard”, calls upon the general public to join the rare disease community, and to reduce the barriers for those living with a rare disease.
The Australian Therapeutic Goods Administration (TGA) defines a ‘rare disease’ as a “condition, syndrome or disorder that affects 1 in 10,000 people or less.” Examples of rare diseases include atypical haemolytic uraemic syndrome (aHUS), cystic fibrosis, muscular dystrophy, spina bifida and haemophilia. It’s understood there are around 1.2 million Australians living with a rare disease, 400,000 of whom are children.
The aHUS Patient Support Group Australia (aPSGA), which represents Australians living with a devastating, ultra-rare blood disease, is utilising today to reflect on the personal trials and tribulations experienced by patients and their families over the past year, who successfully rallied the Federal Health Minister for another year’s subsidised access to the only clinically proven treatment available to save their lives – Soliris (eculizumab).
aPSGA Treasurer, Debbie Basham, who is recovering from a recent kidney transplant, is thankful for the invaluable contribution made by aPSGA members over the past year, whose successful lobbying efforts allowed her to access Soliris pre-kidney transplant.
“My local community in Cairns staged a walk yesterday in support of World Rare Disease Day. Unfortunately, I couldn’t take participate this year, as I did last year, because I am continuing my recovery [from a kidney transplant] in Brisbane.
“I was so impressed that more than 500 people registered to participate in the walk this year, which is fabulous,” Debbie said.
Australian cricketer, Steve Waugh AO and Blooms The Chemist ambassador has publicly declared his support for World Disease Day through his own charity, the ‘Steve Waugh Foundation’. The Foundation helps children and young adults (0-25) living with rare diseases to achieve a better quality of life, the opportunity to connect with others, and offers support services.
Head to http://www.stevewaughfoundation.com.au/ to learn more.