Did you know why Rare Disease Day is celebrated on the last day of February each year? It is because this is the most rare date on the calendar! This curious fact helps to raise awareness about the condition and the issues patients have to face.
What Exactly Does A Rare Disease Mean?
Rare disease is defined as a condition that affects a small number of people in the population. They are often difficult to diagnose, and their treatment is not well-established. The causes of these diseases can be very diverse: genetic mutations, environmental factors or a combination of both. Here we will explore rare diseases in more detail, including their prevalence, diagnosis, and treatment.
Rare Disease Facts & Statistics
Firstly, it is important to note that rare diseases are not actually that rare. According to the National Organization for Rare Disorders (NORD), there are more than 7,000 rare diseases that affect over 350 million people worldwide. Moreover, rare diseases affect all age groups – from children to the elderly, and with an equal prevalence in both men and women. As a fact, around 25-30 million Americans are living with a rare disease.
In the United States, researchers consider a disease as rare if it affects fewer than 200,000 people. As a result, US researchers and physicians also consider paediatric cancer as a rare disease. This is because there are about 15,000 cases annually of childhood cancer. We have to say that there are more than 500 types of rare cancers.
The Challenge On The Diagnosis And Treatment
Unfortunately, the diagnosis of rare diseases can be a challenging process. Since these conditions are not well-known, it can take a long time to find a doctor who is familiar with the disease. In addition, many rare diseases have symptoms that are similar to more common conditions, which can lead to misdiagnosis. Patients with rare diseases may need to see multiple specialists and undergo numerous tests before receiving a diagnosis.
Once doctors diagnose a rare disease, the next step is to determine the best course of treatment. Since these diseases are so rare, there may not be a well-established treatment protocol. In the US, more than 90% of rare diseases are still without an FDA-approved treatment. Patients may need to try several different treatments before finding one that works for them. Furthermore, some rare diseases may require a combination of therapies, such as medication, surgery and physical therapy.
Despite the challenges of diagnosing and treating rare diseases, there is hope for patients. Many research organizations and patient advocacy groups are working to raise awareness about rare diseases and fund research into their causes and treatments. The more we learn about these conditions, it is likely that diagnoses and treatments will become easier and more effective. Rare disease is a significant health concern that affects millions of people worldwide. By increasing awareness of rare diseases, we can work towards better outcomes for those who suffer them.
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