Rare Disease Day is an annual event observed every on the last day of February. It is observed to raise awareness among people about rare diseases and how they can impact patients. Not just patients, the day is also observed to raise awareness also among healthcare professionals, researchers and policymakers about the problems and challenges faced by people living with rare diseases.
The day gives rare disease communities a chance to come together and advocate for better care, treatment and support for people across the world who are affected by these conditions.
Rare Disease Day: History
The European Organization for Rare Diseases or EURORDIS established the day in 2008. The day was observed to raise awareness about rare diseases. Since then, the day is observed annually across the world. It was first observed on February 29, 2008, and the date was chosen because it is a ‘rare day’.
What is a Rare Disease?
A rare disease is defined as a condition that affects a very small number of people. According to a report, the rare disease impacts less than one person in 2,000 people. There are more than 7,000 rare diseases and there are millions of people affected by them worldwide.
Many of these rare diseases can be life-threatening or severely debilitating. Also, patients with rare diseases have to face several difficulties in terms of obtaining a diagnosis, accessing treatment, and receiving adequate support.
Rare Disease Day: Theme
Every year a theme for Rare Disease Day is decided. For 2023, the theme is “Share Your Colours”. This is in continuation of the theme from the last year.
The theme of Rare Disease Day 2022 was ‘Light up for Rare’.
Some rare diseases are:
Duchenne muscular dystrophy: This is a kind of genetic disorder that causes progressive muscle weakness and wasting.
Cystic fibrosis: It affects the lungs, pancreas, and other organs.
Sickle cell anaemia: The disorder is also known as sickle cell disease. It affects the shape of red blood cell that carries oxygen.