Rare Disease Day 2024
In the vast landscape of medical conditions, there exist several diseases that are relatively unknown, frequently misunderstood and tragically dismissed. These are Rare Diseases- a varied group of disorders that, together, affect millions of people worldwide. While individually rare, their cumulative effect poses a serious health burden. Every year, on the last day of February, the global community unites to observe Rare Disease Day, a dedicated time to shed light on these frequently neglected conditions and raise awareness and empower patients in their individual battles.
Understanding rare disease
In the United Kingdom, rare diseases are a significant health concern, despite their low prevalence in the population. According to the UK Rare Diseases Framework, there are approximately 6000 to 8000 known rare disease, collectively affecting around 3.5 million people across the country. This means that roughly 1 in 17 people in the UK are affected by rare disease at some point in their lives. Understanding the prevalence and impact of rare diseases is crucial for addressing the challenges faced by individuals and communities worldwide.
Challenges faced by those affected
The impact of rare diseases extends beyond the affected individuals to their families, caregivers, and communities. Misdiagnosis, ineffective treatment options, limited access to specialised care and financial hardships represent only a handful of challenges faced by those affected. Moreover, the rarity of these conditions often results in a lack of awareness and understanding among the general public and health professionals, further compounding the difficulties faced by individuals living with rare diseases.
Rare Disease Day: A Platform for Advocacy
Rare Disease Day, observed annually on February 28th (or February 29th in leap years), serves as a global platform to raise awareness, promote research, and advocate for improved access to treatment and support for individuals living with rare diseases. Established by EURORDIS-Rare Diseases Europe and first observed in 2008, Rare Disease Day has since grown into a worldwide movement, with events, campaigns, and activities organized in over 100 countries.
Advocacy plays a crucial role in amplifying the voices of individuals living with rare diseases and their families. Through advocacy efforts, we can urge policymakers to prioritize rare diseases on the healthcare agenda, allocate resources for research and development, and implement policies that ensure equitable access to diagnosis, treatment, and support services.
How to get involved
Participating in Rare Disease Day can take many forms, from attending local events and sharing information on social media to fundraising for research organizations and advocating for policy changes. By joining the global rare disease community, you can make a meaningful difference in the lives of those affected by rare diseases.
As a way of marking the day, buildings are lit up in the colours of rare disease day (green, blue, purple and pink) across the globe. Each illuminated building stands as a beacon of hope for those affected by rare diseases and their families. It signifies our solidarity, our determination to raise awareness, and our unwavering support for research efforts aimed at better understanding these complex conditions.
Professor David Jones OBE, Lead of Rare Disease Research UK HUB marked Rare Disease Day 2024 by reflecting on some of the work that unites our clinical and research communities and how we are stronger together in rare disease research. Read his full blog here.
Here are some images of St Mary’s Lighthouse, Newcastle upon Tyne, Gateshead Millennium Bridge, Newcastle upon Tyne, The Leaning Tower of Pisa, Italy and The Clock Tower, Newcastle, Australia.
