Rare Disease Day 2024: All you need to know about the significance of the day

Rare diseases, despite their name, are a significant health concern affecting millions worldwide. These diseases, often overlooked in mainstream news due to their low prevalence, can be devastating and life-threatening. As we approach Rare Disease Day 2024, it's crucial to understand the impact of these conditions and the importance of raising awareness.

Rare Disease Day: A Brief History

Rare Disease Day was first observed in 2008 by EURORDIS and the Council of National Alliances to raise awareness about rare diseases. It falls on the last day of February, but in leap years like 2024, it is observed on February 29th. This day aims to shed light on the challenges faced by individuals and families affected by rare diseases.


Why Rare Disease Day Matters

According to the National Organization for Rare Diseases, one in every ten Americans lives with a rare disease, and globally, there are over 300 million people affected. Despite their rarity, these diseases deserve attention and support, as those affected often face isolation and unanswered medical questions. Rare Disease Day seeks to promote dignity, legitimacy, and awareness of these conditions as a global health concern.

Rare Disease Day 2024: Theme and Significance

The theme for Rare Disease Day 2024 is "Share Your Colours," emphasizing the importance of collaboration and support for those with rare diseases. This day aims to raise awareness, build a community, and promote equity in healthcare access for individuals with rare diseases. It serves as a reminder that while these diseases are individually rare, they collectively impact millions of lives.

Rare Diseases in India: A Closer Look

In India, several rare diseases affect individuals, including Acanthocytosis Chorea, Achalasia Cardia, Acromesomelic Dysplasia, and more. These diseases can have severe impacts on individuals and their families, highlighting the need for increased awareness and support.

Dangal Actor Suhani Bhatnagar's Death Sheds Light on Dermatomyositis

The recent passing of Dangal actor Suhani Bhatnagar at the age of 19 has brought attention to the rare disease she was battling: Dermatomyositis. Suhani, known for her role as young Babita Phogat in the film Dangal, passed away in Delhi on February 16 after experiencing complications related to her illness.

Suhani's battle with Dermatomyositis began when she was admitted to the All India Institute of Medical Sciences on February 7. Despite efforts to treat her condition, she succumbed to the disease nine days later.

According to her family, Suhani started showing symptoms of Dermatomyositis two months ago, but it took ten days from the onset of her symptoms to receive a formal diagnosis. Her case highlights the challenges faced by individuals with rare diseases, where early detection and treatment can significantly impact outcomes.