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Rare disease matter: why is it important

Rare disease matter: why is it important

I am rare, and there is value in all rarity; therefore, I am valuable.

Og Mandino

Humanity has gone far in treating thousands of medical conditions, yet about 400 million people all across the globe still suffer from under_treatment, under_research, and, what’s most important, under_recognition. These people, no matter how big the number feels, suffer from rare diseases, whose rarity means there is a lack of a market large enough to gain support. 

And this isolation is rather enforced, than necessary. With the help of proper educational, informational and philanthropic projects these people are able to secure assistance, which means an enormous shift in their lives. From pure ability to live longer (currently many of them die not reaching the age of 5), to being integrated into society by getting the best treatment possible. 

It is easy to treat the common cold. Now imagine having a condition your doctor has hardly ever heard of. And you have no idea which medical institution has. There is barely any research, your diagnosis changes from appointment to appointment, and the biggest pharmaceutical organizations don’t even plan to invest in such a rare case. This is the reality of persons living with a rare disease. And we can change it for the better with the help of new ways of charity via NFT. 

Blockchain technology sets off the new era of charitable projects. This unique way of buying, selling and collecting art promises lots of possibilities, opening brand new markets and engaging new audiences. Unlike old school charity, NFT can create almost endless cycles of help via the secondary market, thanks to precoded functionality of smart contracts, while being open and honest. We all remember one of the main issues with the classical charity sphere – the lack of transparency. With NFT becoming a new charity platform, this problem is solved naturally just by the core mechanism of blockchain, its inborn transparency.

This trend is now supported by the “Charity Kiss” project, the new NFT charity initiative by Collab.art, Rare Art of Aid (RAA) and TRIPTYCH made in a partnership with the Rare Diseases International (RDI), the global alliance of Persons Living with a Rare Disease and families across the globe. The project’s core idea lies in representing “The Kiss” by Gustav Klimt as a symbol of charity in the crypto community. In the framework of the initiative top multimedia artists from all over the world are reimagining the iconic masterpiece to create their own pieces – all for the purpose of helping people and changing this world for the better. 70% of initial NFT sale proceeds will go directly to The RDI. 

Worthy NFT art is rare. So are the rare diseases. 

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