Rogelio Santos, Jr., CEO of Aevolve, a new platform dedicated to supporting innovative medical research, recently commented on the disturbing gap that exists between the millions of people who have been diagnosed with a rare disease and the life-saving medical treatment they are currently lacking. “Shockingly, 95% of all rare diseases today have absolutely no treatment. On the one side of this gap are the large corporations in the healthcare sector seeking to make a profit, and on the other are millions of patients desperately in need of an effective solution. The top priority of these patients is their health, of course, not whether a medication can produce a profit. As a result, this has become a moral crisis, not just an economic one.” It has been estimated that more than 350 million people worldwide have been diagnosed with some form of rare disease. Nevertheless, medical researchers working in this area continue to find that their important work remains a low-priority segment in terms of funding.
As a result of this impasse, Santos has announced that Aevolve will be making support for research into rare diseases a top priority in its blockchain-powered accelerator. Aevolve will provide alternative funding for medical innovations using token securitization and a direct marketplace for treatment reservations.
Important Facts About Rare Diseases
- In the US, a “rare disease” is considered one that that affects fewer than 200,000 patients nationally. In Europe, a rare disease affects less than one person out of 2,000 people.
- One in every 10 Americans suffers from one of 7,000 different rare diseases.
- It is estimated that approximately 350 million people worldwide live with a rare disease.
- Ninety-five percent (95%) of all rare diseases currently have no existing treatment.
- Fifty percent (50%) of all rare diseases do not have a foundation or research group advocating for research so that a cure might be found.
- Half of all patients who have been diagnosed with a rare disease are children.
- Thirty percent (30%) of those children diagnosed with a rare disease will not live to see their fifth birthday.
In a number of cases, government funding and tax breaks support medical research into rare diseases, so profitability isn’t the only determining factor in the research and development of these treatments. Nevertheless, governments do not play a role in commercialization of medications and bringing them to market, and this fact accounts for the unmet gap between the 350 million people suffering from a rare disease and the medical treatment that might help them.
Rogelo Santos, Jr. has described the mission of Aevolve — through its Biospheres Ecosystem — as one that will align the priorities of patients in need of new treatment approaches with those who play a role in bringing those technologies to market. “It’s time to connect these patients directly with the innovators on the front lines in this fight against rare diseases,” Santos said, “and that’s exactly what we will do at Aevolve, empowering those on the research side to find a market solution that does not depend on government subsidies.”
To learn more about Aevolve, visit Aevolve.Health