Thread by @iam_robi_

Yesterday was #RareDiseaseDay . I take the opportunity to highlight a topic that will be one of my main focus for the years to come. Rare Disease are not rare... The sum of rare diseases affect around 300M people worlwide. 2 striking facts about it and words about my commitment

There are over 7000 rare diseases and the number is growing as new ones are discovered and classified every year. 95 % of which don't have a specific treatment

The average time of diagnosis errancy is 5 years ! 5 years before you get what is happening to you... and then a very low chance to have a specific treatment

For us, it's already been 3 years+ working with rare disease open data now. Our features have caught the eye of private and public actors to support that shared goal of reducing the diagnosis errancy

And Im very proud to tell that we are moving on to the next step. We are launching soon an open innovation platform dedicated to the topic. It's called Rare Disease Knowledge and will be done in partnerships with different actors. ( more news coming soon )

Our first goal will be to accelerate the diffusion of knowledge in moments that are key to the patient journey and support healthcare professionals in their work

I strongly believe Open Innovation is key for tackling the challenges set by rare diseases. It is challenging in many aspects but the result will be worth the ride

This project will be for me one of the main driver to explore technologies like zero knowledge proof as Im convinced they will provide many of the key components of tomorrow's open innovation.

If you are interested to learn more, check this article urlz.fr/kUOf. It's in french but can be used as food for chatgpt ;) The article is presenting one of the major actor's view on the topic and how our platform will fit in