Posts tagged rare disease day
The Skin We’re In: How Race might Influence Disease Recognition
The Skin We’re In: How Race might Influence Disease Recognition

TSC is a rare genetic condition, known for skin brain and skin lesions; therefore, it is classified as a neurocutaneous disorder. As I began caring for patients with TSC, I noticed that not many of my patients were Black. I looked to the literature and asked people in the community, but no one seemed to have answer for this possible disparity.

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Editor's Picks, ResearchMaria Pia Tissotrare disease day, race, disease diagnostics
February 28th is Rare Disease Day – A day on which the rare disease community shouts to all that can hear RARE IS MANY, RARE IS STRONG, RARE IS PROUD!
February 28th is Rare Disease Day – A day on which the rare disease community shouts to all that can hear RARE IS MANY, RARE IS STRONG, RARE IS PROUD!

But what does that mean? Rare diseases are not rare? Rare is many - There are over 7,000 different rare diseases that have been identified and that number is growing. Collectively, in the United States 25-30 million people, over half who are children, have a rare disease. That is 1 in 10 people have a rare disease – this is almost as many people as have diabetes, and more people than have cancer, HIV, and Alzheimers combined.

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Editor's Picks, ResearchMoazzma Arshadrare disease day, rare disease, disease