Rare Disease Day is a worldwide event that falls on the final day of February or near it each year. With the sole objective of uniting individuals grappling with rare diseases and fostering a community where awareness regarding the unique characteristics, conditions, diagnoses, and treatments for these rare ailments is shared.

On this day, organizations like the National Organization for Rare Disorders (NORD) and the Organization for Rare Diseases India (ORDI) came together to advocate for the collective voice of patients across the world who are dealing with rare diseases.

Every year, many strategies are planned to wipe out the prevalence of such rare diseases, including:

• Shine a spotlight on stories told by patients living with a rare disease, their families, and their communities
• Exchange the latest rare disease information with stakeholders to advance research and therapeutic efforts
• Initiate a mutually beneficial dialogue among the rare disease community

 

According to the World Health Organization (WHO), the epidemiology of a rare disease serves as the basis for identification. However, the prevalence of any rare disease should be less than 6.5–10 per 10,000 people, but even today, in many countries, people are unaware of the outbreak of various rare diseases. Keeping this in mind, many communities, organizations, and individuals bring forward the necessity of awareness regarding various rare diseases.

Well, the outbreak of many rare diseases is increasing all over the world, but the influence of rare disease day helps in uplifting the understanding of various rare diseases, such as Acanthocytosis (chorea), Achalasia Cardia, Acromesomelic Dysplasia, Acute Inflammatory Demyelinating Polyneuropathy (AIDP), Alkaptonuria (black urine disease), etc.

The Theme Of Rare Disease Day 2024: Unite for change! Unite for equity!

This year’s campaign to reduce the prevalence of various rare diseases will return to its paramount and perennial theme of achieving true equity for the 300 million people across the world who live with a rare condition.

Importance:

 

This day emphasizes the importance of early diagnosis and treatment for individuals facing rare illnesses. It also promotes education to uplift information about various rare diseases. Furthermore, it acts as a reminder of the ongoing imperative for research and development within the healthcare sector to discover effective treatments for these unique conditions.

 

 

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