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 rare diseases presenting a number of lifelong health challenges for patients, having the technology to offer answers and treatment options has never been more important.

Recent advances in digital health initiatives, including the Undiagnosed Diseases Program, Lyfe Languages and Pilbara Faces, are helping to strengthen our understanding of rare diseases globally.

On May 23rd, 2019, rare diseases were featured on the agenda of the World Health Assembly (WHA) for the first time, showing how new digital tools are being developed and used to support patients living with a rare disease. These digital breakthroughs are also helping to connect isolated patients with world-leading treatments and support, offering new hope to millions of people and their families.

Many rare diseases are highly complex and involve multiple systems throughout the body (multisystemic). This requires specialist knowledge to inform treatment, as well as a high volume of family history, patient care information and other important appointment documentation. Taking a digital approach allows for a stronger integration between primary and specialist healthcare, ensuring vital information is accessible to healthcare providers and helping to provide patients the very best outcomes.

It isn’t just rare diseases that are benefitting from new digital technologies. The increased research and insights into rare diseases around the world has also led to a number of exciting findings for the treatment of a range of common disorders. This includes the development of a number of new medicines, and the development of a COVID-19 symptom tracker, Covidaware.me, which is based on the rareaware.me platform.

Though rare diseases continue to present global challenges, new opportunities are constantly being developed to drive powerful solutions. Project Y is proud to support some of these world-leading initiatives and help make a real difference in people’s lives – today, tomorrow and for many years to come.

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