What diseases are Rare Disease Day?
Rare Disease Database
- 47,XXY (Klinefelter Syndrome) Also known as: KS, XXY male.
- 48, XXYY Syndrome.
- Aarskog Syndrome.
- Abetalipoproteinemia.
- Ablepharon-Macrostomia Syndrome.
- Acanthocheilonemiasis.
- Acanthosis Nigricans.
- Aceruloplasminemia.
What counts as a rare disease UK?
A rare disease is defined as a condition which affects less than 1 in 2,000 people. It is currently estimated that there are over 7,000 rare diseases, with new conditions continually being identified as research advances.
Is there a rare disease month?
February was chosen as Rare Disease Month because it has the “rarest” number of days. Rare Disease Day went global in 2009 via the mobilization of 200 rare disease patient advocacy organizations worldwide.
Why do zebras represent rare disease?
The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct.
What is the most common rare disease?
A report by the global investment bank Torreya looks at the most common types of rare diseases that are a focus for therapeutic companies around the world: Multiple sclerosis emerges above all others, at 90 patients per 100,000 people.
Is there a ribbon for rare diseases?
Global Genes’ Blue Denim Genes Ribbon® is a unifying symbol of hope for the more than 7,000 small rare disease communities around the world. By wearing a Blue Denim Genes Ribbon, you’re building awareness and creating a collective voice for rare disease patients and advocates.
What EDS looks like?
People who have vascular Ehlers-Danlos syndrome often share distinctive facial features of a thin nose, thin upper lip, small earlobes and prominent eyes. They also have thin, translucent skin that bruises very easily. In fair-skinned people, the underlying blood vessels are very visible through the skin.
Does EDS cause stretch marks?
The different structure of the skin in the Ehlers-Danlos syndromes makes it more fragile than normal skin. Stretchiness, abnormal scarring, stretch marks at a young age, easy bruising and slow wound healing are all signs of EDS, but the presence and severity of these issues will depend on the type.
What is a zebra rare disease?
Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.