2022-2-26 13:53 |
Today, Global Genes, a leading international non-profit organization representing the rare disease community, and the American Blockchain and Cryptocurrency Association (ABCA), a multi-stakeholder non-profit association advocating for the use of blockchain and distributed technologies for the betterment of markets and societies, announced a partnership to leverage the power and generosity of the crypto community to fund and spur innovation to treat rare diseases through donations in cryptocurrencies.
The initiative urges investors in cryptocurrencies to donate one-tenth (0.10) of Bitcoin or Ethereum, through The Giving Block to Global Genes and demonstrate — in just one 24-hour period (Rare Disease Day, Monday, February 28th) — the substantial positive impact the crypto community can have in helping to address even our most vexing challenges. Crypto funds raised will be reinvested to support advancements toward drug development that can help hundreds of millions of people and families who have a rare disease diagnosis, but no treatment options. Cryptocurrency donations may also be tax deductible for investors.
“The current model of incremental progress across rare disease needs disrupting,” says Craig Martin, CEO of Global Genes. “At the rate we’re moving, it will take thousands of years to get approved treatments for all rare diseases. We must ignore the ‘it-can’t-be-done’ crowd and forge much better, faster paths toward progress. We’ve seen that the crypto community shares a similar mindset and we’re very grateful for their involvement and investment on our behalf.”
To put the challenge in context, there are by some recent estimates more than 10,000 rare diseases, less than 5% of which have an approved treatment. These diseases have devastating impacts on families, patients, and health systems worldwide.
“As we learned more about the burden of rare diseases, the ABCA jumped at the opportunity to mobilize our community to support Global Genes and their mission to provide individuals and families with rare and genetic diseases a fighting chance,” said Howard Greenberg, President of the ABCA. “Cryptocurrency is adapting so quickly that I am excited to demonstrate the new technology and generosity of our community for such an important cause.”
The first #1in10RARE cryptocurrency challenge campaign starts at 12:01 am on February 28th and ends at midnight. This challenge aims to generate at least $1 million in equivalent donations in a 24-hour period. The donations generated during that period will fund impact grants specifically designed to drive the advancement of technology platforms and drug
development with the potential to address multiple rare diseases, with an emphasis on initial applications in underserved and ultra-rare condition areas.
The donation link is live, and all early donations will be counted toward the Rare Disease Day total. The link will remain active, with the goal of generating $10 million in donations in March, which will create the foundation for an investment fund to incubate entrepreneurs, tech- transfer initiatives and early-stage companies similarly focused in underserved and ultra-rare diseases.
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