Rare Disease Day 2024: Rare diseases often don’t grab headlines, yet they deserve our attention. Because they affect only a small number of people, they tend to stay out of the spotlight. But these conditions can be serious, even fatal, claiming many lives.
That’s why Rare Disease Day is marked annually—to shed light on these lesser-known illnesses and their impact on patients’ lives. As we prepare to commemorate Rare Disease Day this year, let’s explore some key facts about this important occasion.
Rare Disease Day 2024
World Rare Disease Day, observed annually either on February’s last day or nearby, aims to unite individuals with rare diseases, fostering a supportive community where awareness about their conditions, diagnosis, and treatment is shared. In 2024, World Rare Disease Day falls on February 29th, a Thursday.
The World Health Organization (WHO) defines a rare disease based on its epidemiology, with its occurrence typically less than 6.5-10 cases per 10,000 individuals.
In India, the Organization for Rare Diseases India (ORDI), a non-profit, advocates for patients with rare diseases. Considering India’s large population, ORDI classifies a disease as rare if it affects one in every 5,000 Indians or fewer.
ORDI has identified 263 rare diseases in India, with the top 10 including conditions such as Acanthocytosis Chorea (a neurological disorder affecting movement), Achalasia Cardia (a difficulty in swallowing), and Acromesomelic Dysplasia (a skeletal disorder causing short stature).
Other diseases on the list range from blood cancer like Acute Lymphoblastic Leukemia to genetic conditions like Alkaptonuria, commonly known as “black urine disease.”
Rare Disease Day 2024 Date
Each year, we mark Rare Disease Day on the final day of February, specifically February 28th. However, in leap years like 2024, we celebrate it on February 29th. This year, it happens to fall on a Thursday.
Rare Disease Day 2024 Theme
In 2023, Rare Diseases Day is centered around the theme “Share Your Colours!” This theme, building upon the previous year’s focus, encourages patients, governments, world leaders, and other stakeholders to come together. The aim is to combat the stigma associated with rare diseases and increase awareness of the difficulties these patients encounter.
Rare Disease Day 2024 History
Rare diseases impact an estimated 300 million individuals globally, and the discovery of new ones continues. It’s staggering to note that there are approximately 7000 recognized rare diseases, a considerable portion of which lack any known cure or vaccine. This underscores the critical importance of early detection and treatment for those affected.
The inception of Rare Disease Day traces back to 1980, originating as a platform in Europe aimed at raising awareness about these conditions. Over time, its significance grew, leading to its formal designation as a special day by the European Organisation for Rare Diseases (EURORDIS) in 1999.
Initially celebrated in eleven European countries, its momentum expanded, evolving into a worldwide movement by 2008 as more nations joined in.
The recognition of Rare Disease Day as an International Day by the United General Assembly in 2015 marked a pivotal moment, solidifying its global significance. This acknowledgment served to underscore the importance of addressing rare diseases on a broader scale, emphasizing the need for collaborative efforts across borders to provide support and advocacy for those impacted by these conditions.
Rare Disease Day 2024 Significance
Rare diseases bring about considerable hardships for individuals, as well as their families and caregivers, in comparison to more prevalent health conditions. These ailments often result in severe and progressive illness, sometimes leading to premature mortality.
Furthermore, they typically affect multiple organ systems and share symptoms with more common diseases, which can lead to misdiagnosis by healthcare professionals. Enhancing translational research efforts could significantly improve awareness and funding allocation for rare diseases, thereby positively impacting those affected by them.
Rare Disease Day 2024 FAQs
Q.1. What is Rare Disease Day?
Ans. Rare Disease Day, observed annually on February 29th, raises awareness about rare illnesses and their impact on patients’ lives.
Q.2. Why is Rare Disease Day important?
Ans. It highlights lesser-known diseases, fosters support communities, and advocates for better diagnosis and treatment for affected individuals.
Q.3. How many rare diseases are there?
Ans. Approximately 7000 recognized rare diseases affect around 300 million people globally.
Q.4. What is the theme for Rare Disease Day 2024?
Ans. The theme for 2024 is “Share Your Colours,” focusing on combating stigma and increasing awareness about rare diseases.
Q.5. How did Rare Disease Day originate?
Ans. It began in 1980 as a European initiative, gaining momentum globally and receiving formal recognition by the UN General Assembly in 2015.
