Rare Disease Day 2023: Know history, theme, significance and some lesser-known illnesses prevalent in India

Rare Disease Day 2023: Rare Disease Day is an annual observance held on the last day of February, which aims to raise awareness about rare diseases and their impact on the lives of those affected by them. The day was first observed in 2008 and has since become a global event, with events and activities held in over 100 countries.

The theme for Rare Disease Day changes each year, but the overarching goal is to improve understanding of rare diseases and to advocate for the needs of people living with these conditions. The day is an opportunity for patients, caregivers, advocates, healthcare professionals, researchers, and policymakers to come together and share their experiences, knowledge and perspectives.

Rare diseases are defined as those that affect fewer than 1 in 2,000 people. There are over 7,000 known rare diseases and they collectively affect an estimated 400 million people worldwide. Rare diseases often have no cure, and patients and their families may face significant challenges in accessing appropriate diagnosis, treatment and support.

Rare Disease Day history, theme and significance

Rare Disease Day was first observed on February 29, 2008, organised by the European Organisation for Rare Diseases (EURORDIS). The observance was inspired by the successful National Rare Disease Awareness Week that was held in the United States in 1987.

The primary goal of Rare Disease Day is to raise awareness about rare diseases and their impact on patients' lives. The day also aims to highlight the need for increased research, funding, and advocacy efforts to improve the lives of people living with rare diseases.

Since its inception, Rare Disease Day has grown into a global event, with activities and events held in over 100 countries. Each year, a new theme is selected to focus attention on a particular aspect of rare diseases. For example, the theme for Rare Disease Day 2021 was "Rare is Many – Rare is Strong – Rare is Proud", emphasizing the importance of community and solidarity within the rare disease community.

Through its activities and events, Rare Disease Day has helped to increase awareness and understanding of rare diseases among the general public, healthcare professionals, and policymakers. It has also encouraged the development of new treatments and cures for rare diseases and improved access to diagnosis, treatment, and support for patients and their families.

Also Read: Income Tax: What are the 3 deductions under the new tax regime? 

Here are some rare diseases prevalent in India:

-Achondroplasia
-Albinism
-Amyloidosis
-Angelman syndrome
-Apert syndrome
-Ataxia-telangiectasia
-Behçet's disease
-Buerger's disease
-Charcot-Marie-Tooth disease
-Cystic fibrosis
-Ehlers-Danlos syndrome
-Fabry disease
-Gaucher disease
-Hemophilia
-Huntington's disease
-Klinefelter syndrome
-Langerhans cell histiocytosis
-Marfan syndrome
-Myasthenia gravis
-Niemann-Pick disease
-Osteogenesis imperfecta
-Phenylketonuria (PKU)
-Porphyria
-Prader-Willi syndrome
-Rett syndrome
-Sickle cell anemia
-Turner syndrome
-Von Hippel-Lindau syndrome
-Wilson's disease

Click here to get more stock market updates I Zee Business Live