What classifies a disease as rare?

Having recently had International Rare Disease Day on February 28th, I thought it fitting to make the first Zebra Blends blog post, about exactly that. Rare disease, and what exactly it takes for a disease or condition to be classified as such. 

It is estimated that approximately 2 million Australians currently live with a rare disease. As of the 11th March 2020, the population of Australia was estimated by the Australian Bureau of Statistics (ABS) population clock to be 25,628,322. This means, the 2 million or so Australians living with a rare disease makeup approximately 8% of the population, or rather 8 in 100 people. That is a lot of Australians affected by rare disease.  

Given these figures, imagine just how many people this means are in turn, affected by a rare disease without actually living with a rare disease themselves - i.e: they know someone within their family unit, friends circles, or community groups with a rare disease. It’s A LOT. Rare disease, doesn’t seem so RARE, when looked at in this light. Of course, this is the total of all rare diseases and not broken down to an individual rare disease level. 

Take Ehlers-Danlos syndrome (EDS) for example. There are fourteen subtypes of EDS, the incidence of which ranges from 1 in 2,500 people in the most common type, to 1 in 1,000,000 people in the rarest subtype. Another rare disease, called Angelman Syndrome has an incidence of about 1 in 15,000 people. 

The consensus of what makes a rare disease, rare, is a condition that affects less than 0.05% of the population or 5 in 10,000 people.

 An unfortunate aspect of rare disease is that often the myriad of symptoms experienced are so complex that a diagnosis isn’t always readily determined and it can take many years for patients to seek out appropriately qualified (interested) doctors to obtain an accurate diagnosis. 

Speeding up the time to diagnosis is imperative for people living with rare disease; so timely treatment and/or management plans can be developed and enacted. 

If you would like more information on rare diseases, follow the below links: -

 

Rare Voices Australia - www.rarevoices.org.au

 

The Ehlers-Danlos Society - www.ehlers-danlos.com

 

Both of the above-listed organisations are charities that Zebra Blends chooses to support via donation of a total of 50% of all profits to these causes.

So, until next time. 

Janna ZBs x


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