Rare Disease Day: Here's Everything You Have To Know

Rare Disease Day: Here's Everything You Have To Know

Rare Disease Day was launched by EURORDIS, a European rare disease patient organization, in 2008. However, many people do not know that there are actually many rare diseases.

In the USA, a disease is defined as rare if it affects fewer than 200,000 Americans at any given time. That is why global cooperation is so important. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.

"From our perspective it is crucial that United Kingdom institutions can continue to work closely with their European counterparts so that United Kingdom and other European patients will not lose out", he argued. According to the Spanish Neurological Society, there are about 7,000 of these types of diseases, of which 45% affect the nervous system, and more than 50% in the neurological sphere. So while the term "rare disease" might suggest otherwise, there are around 350 million people out there living with one of these rare diseases.

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Rare diseases were equally prevalent in both developed and under-developed countries an equal opportunistic disease, the organisation said. There are more than 7,000 known rare diseases, and only about 10% have approved treatments available to patients. Experts say thar these are rare diseases in which patients are often misdiagnosed with other diseases prior to getting a definitive diagnosis. "Clinical research will help us find better and more effective treatment for rare disease".

"Rare disease patient communities need to come together on a common platform". The Rare Disease and Pediatric Center of Excellence will "oversee all rare disease and pediatric-related drug development activities" for the company, according to a news release.

In order to raise awareness about rare diseases and their impact on patients and their families' lives, Rare Disease Day is observed on the last day of February each year. Rare diseases and disorders are less likely to receive the funding and awareness required to accelerate research.

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