Observed annually on the 28th of February, or in leaps years, on the 29th (the rarest day of the year), Rare Disease Day stands as a global initiative committed to fostering equity in social opportunities, healthcare, and improved accessibility of diagnoses and treatments for those living with rare diseases.
A rare disease is a medical condition that affect a small percentage of the population, usually affecting fewer than 1 in 2,000 people. Given the scarcity of cases, this frequently results in a lack of widespread recognition and limited understanding of the conditions that exist.
The main objective of this year’s campaign is to strive for equity which means advocating for fairness by tailoring support to individuals’ specific needs. Today is an opportune moment to get involved, highlighting the rare diseases that exist across the world and strive for better understanding.
Across the world, 6,000 rare diseases exist, and the symptoms, severity and prognosis can vary widely. Examples of rare diseases include genetic disorders, metabolic disorders, and autoimmune conditions. Of the 300 million people who are diagnosed with these conditions, most will often face disparities, meaning they could receive delayed treatment, misdiagnosis, limited treatment options or inadequate support systems. Addressing these disparities requires a global effort to shift perception, advocating for policy changes, increasing research funding, and fostering a more inclusive and supportive environment for those living with rare diseases.
Together, we can break down the barriers which are faced by the individuals who suffer from these conditions. Championing a deeper understanding paves the way for enhanced resources, advanced research, and ultimately contributes to an elevated quality of life.
- A disease is rare when it affects fewer than 1 in 2,000 people.
- 70% of rare disease start in childhood.
- More than 6,000 rare diseases are identified.
- 72% of rare diseases are genetic.
- 1 out of 5 cancers is rare.
Join with us to advocate for Rare Disease Day and share the information with friends and loved ones.
For more information visit www.rarediseaseday.org