World Rare Disease Day 2020
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Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.

There are over 300 million people around the world are living with a rare disease each supported by family, friends and a team of carers.

-There are over 6,000 identified rare diseases.

- Rare diseases currently affect 5% of the worldwide population.

- Each rare disease may only affect a handful of people, scattered around the world, but collectively the number of people living with a rare disease is equivalent to the
population of the world’s third largest country.

- 72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes or are rare cancers.

- 70% of genetic rare diseases start in childhood.

- A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people.

Characteristics of rare diseases:
- 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.

- 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.

Common chaellenges:
- The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.

- As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.

Source: https://www.rarediseaseday.org/
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