A member asked:

Why is it important to raise awareness of rare disorders? lizzie velasquez is famous for a disease that few people have, while millions suffer from diabetes...

16 doctors weighed in across 6 answers
Dr. Jalal Zuberi answered

Specializes in Pediatrics

To get grant funding: Rare diseases need funding for developing drugs and require many years of research (clinical trials) to develop full understanding the full spectrum. While the majority of funding is from the government (NIH) private foundations help as well sector. In either case, "awareness" drives the appropriation of dollars towards the cause.

Answered 9/29/2014

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Both are important: It is important to raise awareness of rare disorders so that people suffering from them can be recognized, diagnosed and treated. It is also very important to make people aware of common disorder such as diabetes and heart disease so that they will recognize symptoms and get treated.

Answered 4/24/2016

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Because they exist.: Even though they're rare, these conditions are real and some people are going to get them. The answer to someone's malady isn't always obvious and these rare conditions need to be remembered.

Answered 9/29/2014

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Dr. Maulik Shah answered

Specializes in Clinical Genetics

Raise medical info: Rare diseases are often less complex genetically. As a result, understanding the cause and effects of these disorders can often help in our understanding of the physiology or more common disorders. Also, rare disorders are more difficult to diagnose and there is less support for individuals with them so increasing awareness allows patients to not feel so alone and allows doctors to gain knowlege

Answered 12/1/2014

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Rare disorders: Well, it raises more awareness and through research we may find a solution or a cure. There are others like you who believe that resources should be directed at more common diseases and statistically, that is true. More physicians and scientists are doing research on more common diseases and there is more awareness about the more common diseases such as heart disease, cancer, diabetes, etc.

Answered 2/7/2015

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Rare disorders: Evaluation and management of rare disorders has been going on for decades and every now and then something special; and worthwhile comes up. Over time we learn how and when to use the new drugs on rare disorders and may turn out to prevent future issues in others.

Answered 1/23/2015

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