Rare Disease Day

Blogs

February 22, 2024

By Heba Hendawi

The 29th of February this year marks Rare Disease Day. On this rare international day, many nations worldwide celebrate rare diseases by sharing information, raising awareness and giving support to many patients who think that they are alone in their battles. 300 million persons all over the world suffer from one kind of a disease that is classified by medicine as rare. Patients suffer silently from some unexplained symptoms that doctors in many cases misdiagnose them due to their resemblance to other illnesses. This late diagnosis leads to prolonged suffering and reduced quality of life. When a disease is not commonly treated by doctors; they know very little information about it. The prognosis is sometimes uncertain and the treatment is not decisive. Consequently, the family members are unable to handle the changes occurring to one of them who suffers silently and fades away gradually.

Read: What is Rare Disease Day?

Therefore, it is of utmost importance that people with common rare cases gather together and discuss their conditions with medical staff, researchers and doctors. The more information and knowledge are gathered, the more help and support can be given to patients. Unlike common known diseases of frequent protocols of treatment, rare diseases tend to be challenging for many doctors. Some doctors may not handle a single case during all their work until they encounter one case that puts their career on stake. Genes play a role in some diseases and in one family, doctors find more than one case handed out from generation to another. If left untreated or maltreated, a patient might live with a disability or fatalities.

According to Rare Disease Organization, more than 6000 kind of rare conditions differ from one patient to another. As per the statistics, 72% of the cases are hereditary. One in 5 cases of cancer is considered a rare case. The life of many patients are in jeopardy because of late discovery and incorrect diagnosis. In some cases there is no cure in one country while in other medicine is more advanced and better treatment is provided by healthcare specialists. Connection between people shortens the long way of diagnosis and gives due care and support. This is the essential benefit of joining efforts worldwide for making life easier for rare disease patients.

According to Rare Disease Organization, more than 6000 kind of rare conditions differ from one patient to another

Thus, many organizations agreed on setting the last day of February to be dedicated to raising awareness and supporting rare diseases in all possible means. Social media platforms and the internet connected people in a blink of an eye. Now patients feel support and solidarity. They are no more suffering unattended but rather hands are stretched for help from many countries. Now they share information, seek medical help, and get psychological and communal support. Rare warriors exchange stories of success and challenges. Instead of depression and gloominess hope dominates and resilience is in charge.

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On this as rare a day as it celebrates, it is a chance to defend the right of all people to have equal rights to be understood and cared for. 100 countries adopt the initiative and offer community support and awareness for those persons who lead an exceptional life. Events are held worldwide just to deliver a clear message to those warriors: “We are with you. We understand your ailments and we feel for you. You are not alone and we shall support you as much as we can.”