On 28 February 2018, people living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry around the world came together in solidarity to raise awareness of rare diseases. The wider community was invited to learn more about rare diseases and help overcome the isolation often experienced by people living with a rare disease and their families.
In 2018 the theme for Rare Disease Day was ‘With research, possibilities are limitless’.
Rare disease research is crucial to providing patients with the answers and solutions they need, whether it is a cure, treatment or improved care.
Because of the nature of rare diseases, the dynamic between patient and research is a bit different in rare disease than in more common diseases. Rare Disease Day 2018 was an opportunity to recognise the essential role that patients play in research. They advocate for research. They often fund research. Patient groups often partner in research projects. Patients participate in clinical trials and social and market research related to rare diseases.
Join us in making the voice of rare diseases heard!
For more information visit www.rarediseasedayaustralia.com.au.
Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples.
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