Rare Disease Day 2024: Proud to be blue
Rare Disease Day (29th February) is a global movement started in 2008 with the purpose of increasing awareness of rare diseases. Today, with 106 countries involved, an international community has worked together to create accessible diagnosis, treatments and support networks for people living with a rare disease.
Join us this week as we support Rare Disease Day to help raise awareness of rare diseases and provide expert insight on the progress and challenges of rare disease treatment, through blogs, videos, and webinars.
Blue. What comes to mind when you see that word? The ocean? The sky perhaps? For a colour that occupies over half of the world’s surface area, it is in fact the rarest occurring colour in nature.
Now think of the phrase, ‘rare disease’. Do you feel a sense of worry? Unknowing? Diaceutics is proud to support this incoming Rare Disease Day by sharing our colours, but with a slight twist. Rare Diseases are defined as, ‘a disease that affects fewer than 1 in 2,000 people’, with 70% of them starting from early childhood1. Globally, there are over 300 million people that are affected by rare disease. Awareness for rare diseases has increased tenfold through the success of the official Rare Disease Day campaign and the growing number of patient success stories. Nevertheless, the pathway to improved patient outcomes is a complicated one, with many barriers interfering along the way. Some of these barriers include:
- Small patient populations that render trials unfeasible
- Overall lack of research in rare diseases
- Difficulty accurately identifying and diagnosing the disease
- Lack of expert support and advice
- Limited funding sources
Diaceutics’ belief is that every patient deserves the right test and the right treatment to positively benefit their disease outcome. In acting out this belief, Diaceutics has helped hundreds of patients with rare diseases by working hard to mitigate the barrier that is misdiagnosis. Through harbouring real-world data, Diaceutics has been able to provide insight into rare biomarkers and identify patients who are eligible for treatment of rare diseases. In doing so, reducing time to diagnosis and subsequently, improving patient’s medical journey.
In today’s society, it can be difficult to live with something that is considered ‘rare’. People may experience funny looks, unusual questions and in some cases, they are bullied for their uniqueness. On the other hand, when you think of the colour blue, you may think of the sensation of calmness, inspiration, and freedom. In sense, having a rare disease is just the same as the colour blue. Someone who is proud to be blue is one who is not brought down by their disease, but someone who is empowered by it.
Be proud to be blue.