If there were 14 kids with the flu in the same classroom, it would be pretty easy to tell what’s going on when the next one gets sick. We would know from the recent experience how long this flu is lasting and what symptoms are the most common.
But what if there were only 14 kids in the world with a rare disease? Up until recently, they might never have heard about each other. Their doctors may not ever have heard about them. And understanding and progress would be frustratingly slow.
We are living at a time when physical distance as a barrier to connecting has been exploded. Today, 14 people anywhere in the world could connect, support and discover together. The world is our classroom. And this is important.
Rare Diseases are Not Rare.
On the last day of February each year (sometimes on February 29) the US celebrates Rare Disease Day. And we are just one of 94 counties officially celebrating Rare Disease Day around the world to build awareness of the many rare diseases that go undiagnosed or uncured.
The FDA estimates that 30 million people in the US — almost one in ten Americans — have one of more than 7000 known rare diseases. And it’s more than 380 million people worldwide. Each one is a story. Often a story of desperation. This is an issue of staggering importance.
The World is Our Classroom: and the New Teacher is Amazing
Not only have the tools arrived to allow people with rare diseases to connect with each other, but our learning tools are also accelerating exponentially. Even from a small handful of patients we can now collect a huge amount of data: the genome, the microbiome, the metabolome, the proteome, the exposome, and much, much more. And sophisticated algorithms are able to detect patterns in the wealth of data. We are on the threshold of patients with rare diseases being able to pose questions and find the answers — with the aid of each other, those who care for them, and emerging technology.
All Diseases are Rare Diseases
And this is important for all of us. Because every disease is a unique combination of disease process and host biology. We can all benefit from the power of connection, data collection, pattern recognition, and illumination.
This is the 11th Rare Disease Day. The first was on February 29, 2008. The promise of making a real difference for people with rare diseases has never been brighter. And of seeing ourselves as part of this community has never been stronger.
Our mission at doc.ai we are a team of people all motivated to use all the tools in our power to make a difference. Register for early access here.
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