Building Awareness of Rare Diseases
A rare disease is classed as one that affects fewer than 1 in 2,000 people, and it estimated that as many as 30 million people in Europe may be affected.
Rare Disease Day on 28 February aims to raise awareness about rare diseases and their impact on people's lives.
Life-long and debilitating
There are approximately 6,000 rare diseases, 80% of which are genetic. The diseases that are not genetic tend to be those that result from infections, allergies or environmental causes.
Rare diseases are often life-long and the symptoms often get worse over time. Some rare diseases are life-threatening or cause severe disabilities.
Children are significantly affected by rare diseases, with 75% of rare diseases affecting children and 30% of rare disease patients dying before they reach the age of five.
Examples of generic rare diseases include cystic fibrosis, which affects the respiratory and digestive systems; Huntington’s disease, which affects the brain and nervous system; and muscular dystrophies, which affect the muscles.
Examples of rare diseases that are related to environmental factors include some types of anaemia that are caused by vitamin-deficient diets; and mesothelioma, a rare cancer that affects the cells lining the chest cavity.
Because there are relatively few people affected by each of the diseases, medical knowledge and expertise is rare, and research into causes and treatment limited.
Rare Disease Day is raising awareness of the problems faced by the millions of people affected by a rare disease. These people are described as ‘orphans of the health system’ due to them finding it difficult to get a diagnosis or adequate treatment, and not benefiting from research.
Rare Disease Day was created by EURODIS and its Council of National Alliances. EURODIS represents around 300 rare disease organisations in over 30 countries, covering more than 1,000 rare diseases.
The first awareness day was in 2008 on 29 February – a ‘rare’ date that happens only once every four years. Since then, it was taken place on the last day of February every year. Events take place in over 100 countries around the world.
The aim of Rare Disease Day is to improve knowledge among the general public of rare diseases, and to encourage researchers and clinicians to address the needs of people living with rare diseases. The 2019 event is focusing on ‘bridging health and social care’.
This article was written by a third party source and does not reflect the views or opinions of Ramsay Health Care unless explicitly stated.
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