Solving the most challenging medical mysteries for children living with a rare disease.
Project Y and the Rare Care Centre at Perth Children’s Hospital have partnered with the Indian Organisation for Rare Diseases (IORD) to improve rare disease visibility and recognition on a global scale. Following advocacy from IORD, the health commissioner of...
A recently published article in Perth Now has brought light to the individual journeys of people living with a rare disease through the healthcare system. It follows the story of Alex and his family through his 8 year diagnostic odyssey,...
“The silence surrounding this global endemic, affecting more than 300 million people, is increasingly being replaced by a roar” Dr Gareth Baynam was invited to write a guest editorial by the Canadian Institute of Health Research (CIHR) for their Rare...
With the recent adoption of the UN Resolution on Addressing the Challenges of People Living with Rare Diseases, the importance of the rare diseases is coming into the spotlight globally. Why are rare diseases important? They are Common –...
2020 has not been an easy year for anyone. With global lockdowns affecting the way we live, work, travel and communicate globally, adapting to ever-changing circumstances has been essential. However, for the millions of Australians and people across the globe...
Since Pilbara Faces was first launched in 2017, it has already helped to solve a number of challenging medical mysteries in the Pilbara. With one third of genetic and rare diseases presenting with some form of facial clues, being able...
The Lyfe Languages Champions are a group of young Australians helping to translate complex medical terminology into a number of local Aboriginal languages across the country. Six languages are currently being translated, each powered by its own Champion. Find out...
Lyfe Languages was successfully launched on the global stage on Sunday 9th August 2020, as part of the International Day of the World’s Indigenous Peoples. With the project now established in the West African nation of Ghana, the opportunities to...
When you think of rare diseases, it might surprise you to find out how common they actually are. It is currently estimated that 6 to 8% of the world’s population is affected, which equates to over 400,000 people. With many...