28/02/2025
Today is Rare Disease Day! 🖐
A disease is considered rare when it affects fewer than 1 in 2000 people.
Rare diseases – by the numbers:
🦠 300 million people with rare diseases
🦠 3.5 – 5.9% of the population
🦠 72% are genetic diseases
Characteristics of rare diseases:
🧬 70% of rare diseases start in childhood
🧬 All paediatric cancers are rare cancers
Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
72% of the diseases are genetic and almost 1 out of 5 cancers is rare.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
Rare Disease Day is about raising awareness and encouraging fundraising to help further research into these conditions for better diagnosis, treatment and quality of life for those suffering. 🧪
More information about rare diseases and Rare Disease Day can be found here: https://www.rarediseaseday.org
