Rare Disease Day
Today, 28 February, is international Rare Disease Day – a day dedicated to recognising the struggle for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease. ALHR calls on Federal, state and territory governments to ensure that their budgets and policies reflect Australia’s international legal obligations to protect the human right of people living with rare diseases to the highest attainable standard of health and to facilitate their participation in society on an equal basis with others. Without their human rights protected in law, people living with rare disease and their carers all too often fall through the cracks.
The introduction of a Federal Human Rights Act – and a Human Rights Act in the states and territories yet to legislate one – would establish a framework across Australia that protect everyone’s right to live with dignity and equality. When we protect things like the right to access healthcare without discrimination, to inclusive education, or to bodily autonomy we give everyone involved in the work of government the tools to make sure no one is left behind. Importantly, we also give people whose rights have been violated the tools to take action for a solution.
As joint leaders of the Welcoming Disability Campaign, today we also highlight the disproportionate impact that Australia’s discriminatory Migration Health Requirement has on people living with rare disease and their families. Today and every day we recognise and celebrate their valuable, diverse contributions to our communities. We call for laws that recognise these contributions instead of unjustly stigmatising people with rare disease as a net burden to our society.
Today ALHR also acknowledges the incredibly important work and advocacy of organisations like Rare Voices Australia and stands with everyone in our community whose lives are impacted by rare disease.
Find out more about Rare Disease Day here
If you are in Australia, you can also learn more and access support through the Rare Voices Australia – the national peak body for Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability and other systems that work for people living with a rare disease: