five things you may not know about rare disease

The last day of February, every year, is celebrated as Rare Disease Day. It aims at raising awareness about such diseases. Rare diseases are also called orphan diseases and are those that affect a very small percentage of the population. However, families and patients face similar struggles that need to be acknowledged.

Very few people know much about rare diseases since only very few people are affected by them. Also, every country has a different way to measure and determine if a disease is rare or not. Another problem in determining the rarity of a disease is that a disease which is rare in one country, may not be as rare in the other and in fact, be common.

Here are 5 things you may not know about rare diseases and you must:


How do rare diseases occur?
According to rarediseaseday.org, 80% of rare diseases have genetic origins while others may be results of bacterial or viral infections, allergies or other causes. The data also says that around 50% of rare diseases affect children only.

What are the symptoms of rare diseases?
The symptoms of rare diseases may vary from disease to disease and also from person to person suffering from the same disease. Some symptoms are so common that they can cause a delay in the diagnosis of a rare disease, causing more complications.

How are patients of rare diseases affected?
Patients of rare diseases can have various life-altering effects. The diseases can be disabling, degenerative and even life-threatening, causing complications in the everyday lives of the patients and their families. Since there are very few or almost no existing cures or remedies for rare diseases, the suffering of the patients is increased even more.


What is the social burden on patients of rare diseases?
Since there is very little awareness about rare diseases, and very few people know about the rare disease that someone is suffering from, it may result in a lot of social burden. Lack of scientific knowledge and research in the field of rare diseases is one of the main causes of the social burden.

What is the theme of Rare Disease Day 2019?
Last year the theme of the Rare Disease Day was “Show your rare, show you care.” which reflected on the need to take away the social stigma associated with certain rare diseases. This year in 2019, the theme of Rare Disease Day is 'Bridging health and social care' which will work on bettering healthcare facilities for patients suffering from rare diseases.