On Rare Disease Day 2023, we recognise the resilience and fortitude of the rare disease community including patients and carers, and the healthcare professionals who support them.
A rare disease is defined as a disease that affects fewer than 1 in 2,000 people. While each rare disease may be uncommon, collectively, rare diseases affect millions of people worldwide. In fact, there are over 7,000 rare diseases, and many of them are chronic, progressive, and life-threatening.
At Commercial Eyes, we acknowledge that living with a rare disease can be a challenging and isolating experience.
Patients with rare diseases often face significant delays in diagnosis, misdiagnosis, and lack of access to appropriate treatment and support. Many patients and their families struggle with financial burdens and social stigma, as well as feelings of uncertainty and fear for the future.
One of the biggest challenges in rare diseases is the lack of research and treatment options. Due to the rarity of these diseases, there is often limited funding and resources for research and development of new therapies. This means that many rare diseases have no cure or effective treatment options, leaving patients and their families feeling helpless and unsupported.
However, there is hope for the rare disease community. Leading patient advocacy groups, Rare Voices Australia and Rare Cancers Australia work tirelessly to raise awareness and advocacy and there has been progress in the development of new treatments and therapies for many rare diseases. In recent years, there has been a growing focus on patient-centred research, which prioritises the needs and perspectives of patients and their families in the development of new treatments.
There has also been progress in the use of technology, such as genomics and personalised medicine, to improve diagnosis and treatment for rare diseases. With the help of digital health tools and telemedicine, patients and their families can connect with healthcare professionals and other patients around the world, breaking down barriers to care and support.
We will play our part to continue to raise awareness and advocacy for the rare disease community, to ensure that their voices are heard, and their needs are addressed.
says Jo Atkins, Head of Access, Research and Intelligence “We feel privileged to work with many companies to assist them to enable Australians, with rare diseases, access to their innovative and often life saving medicines.”
Commercial Eyes Stands with Rare Disease Community on Rare Disease Day 2023
On Rare Disease Day 2023, the Commercial Eyes team stands with the rare disease community and recognise their strength and resilience. We encourage all stakeholders to work together to support research and development of new treatments and to improve access to care and support for patients and their families. Be proud to be rare and to advocate for a better future for all those affected by rare diseases.
For more information on Rare Disease Day 2023, visit rarediseaseday.org #RareDiseaseDay #ShareYourColours #LightUpForRare